fall 2011: volume 17, issue 2

newsletter of the myelodysplastic syndromes foundation

VISIT OURRE-DESIGNED

MDSF WEBSITE(See page 10)

ContentsNews From The Foundation 4

Meeting Announcements 6

American Society of Hematology(ASH 2011) 7

Patient Forums and Support Groups 8

Patient Stories 9

Patient Tributes 11

A Nurse’s Story 12

MDS Centers of Excellence 13

Information on Clinical Trials 16

Educational Resources 18

Contributions to the Foundation 21

In Memoriam 23

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From the Guest Editor’s Desk

In order to encourage our training staff(scientists, doctors and nurses) we designateda dedicated trainee lounge, preferentialpositioning of trainee’s posters, and atrainee workshop hosted by Drs. Nimer,Hellstrom-Lindberg, van de Loosdrecht andSteensma. Meet the Expert sessions wereprovided at lunchtimes and the popularity ofmorphology workshops run by Drs. Bain,Bennett and Goasguen proved that“morphology was not dead” (a subjectdebated during the symposium). SandyKurtin, Louise Arnold and Erin Demakosorganized the parallel sessions for nursesincluding case studies, clinical trials issuesand nurse-led transfusion programmes. TheMDS Patient Support UK Group ran asuccessful patient forum with guestspeakers from the faculty.

Drs. Nimer and Bowen welcomeddelegates on behalf of the organizingcommittee and the MDS Foundation. Theintroductory session on the late afternoon ofWednesday 18 May focused on the patient-physician dynamic. Compassionate physicians(Drs. Sekeres and Steensma) and eloquentpatients (Patrick Festy and David Hall)provided insight into this complex andchallenging interaction. This session wasclosed by Iain Milne, whose illustrated reviewof the history of medicine in Edinburgh wasthe perfect bridge to the Welcome Receptionat the National Galleries.

Instead of the traditional talks aboutepidemiology and morphology, the openingscientific sessions discussed new diagnosticparameters, prognostic scores and quality oflife. Although the current state of the art for

Edinburgh, UK: May 18–21, 2011

The May wind and cool temperatureswelcomed 1,572 delegates to Edinburgh forthe 11th International MDS Symposium.Delegates attended from 58 countries withSpain, Italy and France those countries withthe highest delegate numbers.The symposiumChairman had assembled a strong localscientific committee to partner with theBoard of Directors of The MDS Foundationin order to prepare an interesting andstimulating scientific programme. Severalprinciples underpinned the programming:short talks, delivered by predominantlyyounger investigators and, where possible,in the format of a debate. This format wasgenerally successful and seemed to freshenup the symposium and more importantlyretain the audience in the hall despite themany attractions that Edinburgh holds forthe visitors. Professor Fenaux was particularlyimpressed by the attendance in the mainauditorium throughout Thursday and Friday!

11th International Symposium onMyelodysplastic Syndromes: An Overview

David T. Bowen, MDProfessorSt. James’s University HospitalSt. James’s Institute of OncologyLeeds, United Kingdom

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In summary I believe that the symposiumwas a success on a number of levels; thequality of the science presented, theencouragement of younger delegates andfaculty, and the general bonhomie thatpervaded the 4 days and left all feeling thatan interest in MDS was to be continued... inBerlin in 2013.

Finally the organizers are grateful for thegenerosity of the sponsors and exhibitorswith whom the MDS Foundation continues toenjoy a productive and creative collaboration.

diagnosis remains morphology in mostcenters, the meeting organizers were keento court controversy by looking to the futureat every opportunity. The biology of MDS wasthen discussed in detail to reflect theexplosion of new data since MDS 2009. Inparticular, presenters discussed stem celldysregulation, the bone marrow micro-environment, the 5q- syndrome and immunedysfunction, plus the potential for vaccinationtherapy in MDS. The plethora of molecular,gene expression and epigenetic abnormalitieswere then discussed with particularreference to MDS/MPN overlap syndromessuch as chronic myelomonocytic leukemia inwhich >50% patients have one or moreidentifiable clonal marker.

Plenary sessions continued covering allaspects of therapy for MDS includingdebates in the controversial areas of ironchelation therapy (Steensma vs. Gattermann),lenalidomide for del(5q) MDS (Fenaux vs.Jadersten), and when and whom to offerstem cell transplantation (Mufti vs. Cutler).Each debate was provocative with no clear‘winners’—reflecting the difficulty that weall have with decision making in theseaspects of management where there is noright (or “evidence-based”!) answer. Theentertainment highlight of the scientificcongress was undoubtedly Drs. Steensmaand Gattermann who crafted a Minnesotamountain drama out of an otherwise banal(but important) subject: namely iron chelation.Congratulations to them both; they are clearlyin the wrong profession! Drs. List andGuillermo-Garcia rounded off the invitedplenary talks with an overview of novelagents in clinical trial for MDS patients;maybe one or more of these will be the next“lenalidomide” or “azacitidine”.

A record 330 abstracts were received —many thanks to the abstract reviewers whohad to review and score far more abstractsthan had been originally anticipated. Fromthese abstracts, 30 were selected for oralpresentation and 275 for poster presentation.The quality of abstracts submitted was veryhigh and this was reflected in the outstanding

plenary abstract session to close thecongress. The predominance of high qualitybiological data presented at this sessionreflects the progress in this field, and twoabstracts elucidating the biology of MDSwith ring sideroblasts were presented. Thefirst, presented by Dr. Hellstrom-Lindberg (onbehalf of Dr. Nikpour), outlined more evidencefor the central role of the transporterprotein ABCB7 in the pathogenesis of ringsideroblast formation; and the second—and the scientific highlight of MDS2011— describing the high frequency ofmutation in the gene encoding a RNA splicefactor complex protein SF3B1 in the samepatient group, presented by Dr. Papaemanuil.

A more relaxing element of thepreparation was the choice of a socialprogramme, expertly coordinated by KenesInternational, contracted as the professionalconference organizers for their first MDSinternational meeting (project managed byMs. Keren Shurkin). The Welcome Receptionat the National Galleries provided tranquilityand quiet promenading amongst the fineartwork on display in these interestingpublic spaces. This could not have beenmore contrasting with the Gala Dinner inwhich whisky tasting lubricated the legsand arms for the late evening traditionalScottish ceilidh dancing. Dr. Hellstrom-Lindberg bravely danced through cervicalnerve compression, and those that thoughtthey could not dance were (generally)proved wrong and captured on camerafor posterity.

Venue Edinburgh International Conference Centre

Delegates 1,572 from 58 countries

Abstracts 330, with 30 oral presentations

Scientific highlight SF3B1 mutation in MDS with ring sideroblasts:Dr. Papaemanuil

Entertainment highlight Iron chelation debate:Drs. Steensma and Gattermann

The MDS Foundation...

The abstracts of the 11th InternationalSymposium on MDS published byLeukemia Research are now availableupon request by contacting the MDSFoundation at 1-800-MDS-0839.

11TH INTERNATIONAL ABSTRACTS

Table 1. Bitesize Highlights

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Highlights from 11th International MDS

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From The Foundation

“helping you give hope...”

■ WORLDWIDE PATIENT QUALITY-OF-LIFE FORUMS

■ WORLDWIDE PATIENT SUPPORT GROUPS

■ INTERNATIONAL NURSING LEADERSHIP BOARD

VISIT US ON FACEBOOK AND TWITTER!

www.mds-foundation.org

The MDS Foundation is a multi- disciplinary, international organization devoted to support, research, treatment, and education for patients, caregivers, physicians, and other health care providers. The organization is based upon the premise that international cooperation will accelerate the process leading to the control and cure of these diseases.

Please join us as a memberof the Foundation.

JOIN US AS AN MDS CENTER OF EXCELLENCE

Apply for The Centers of ExcellenceProgram:

Would you like your treatment center to become part of the Foundation’s research network and referral system for MDS patients?

Please call us for more information andan application.

MDS FOUNDATION PUBLICATIONS

The MDS Foundation provides the following information to physicians and patients, free of charge:

➧ The MDS News

➧ The MDS Messenger (Free E-News)

➧ Patient Diary

➧ What Does My Bone Marrow Do?

➧ Understanding Myelodysplastic Syndromes: A Patient Handbook*

➧ Anemia, Blood Transfusions, Iron Overload, & Myelodysplastic Syndromes: A Handbook for Adult MDS Patients*

➧ Insurance and Reimbursement Resources for MDS Patients

➧ Planned Giving Program: A Guide to Financial Planning

These Working Groups are funded through the Foundation and focus on moving disease knowledge forward by developing essential information through innovative research.

➧ International Working Group for MDS Morphology

➧ International Working Group for MDS Cytogenetics

➧ International Working Group for Quality of Life in MDS

➧ International Working Group for Prognosis in MDS

INTERNATIONAL WORKING GROUPS

THANK YOU TO OUR SPONSORS FOR THEIRSUPPORT

VISIT OUR WEBSITE ANDLINK TO OUR EDUCATIONALRESOURCE CENTER:

NEW FROM THE FOUNDATION➧ A Caregiver’s Guide to MDS: What Can You Do to Help?

* Select MDS Patient Handbooks are available in English and the following languages:

ARABIC

HEBREW

ROMANIAN

CZECH

HUNGARIAN

RUSSIAN

DUTCH

ITALIAN

SPANISH

FRENCH

JAPANESE

GERMAN

POLISH

SWEDISH TURKISH

GREEK

PORTUGUESE

FOUNDATION INITIATIVES FOR 2012 AND BEYOND...

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About the FoundationWho Are We?The Myelodysplastic Syndromes Foun-dation, Inc., was established in 1994by an international group of physiciansand researchers to provide educationabout MDS to physicians and patients,support for MDS research, patient support,and advocacy.

During the past decade, we haveindependently solicited funding for eleveninternational symposia that have beenattended by over 7,000 individuals —physicians and patients. These symposiaare held biannually and have greatlyimproved our knowledge of thesedisorders as we continue to providephysicians worldwide with the most up-to-date information on research in MDS.The 12th International Symposium will beheld in Berlin, Germany, May 8–11, 2013.

What Does the Foundation Do?The Foundation works to maintain aninternational information network to sharenew research and new treatment options asrapidly as possible, to provide informationand educational support for both physiciansand patients, and, ultimately, to providefunding and oversight for internationalstudies of MDS. Currently the Foundationsupplies patients, physicians, and otherinterested parties with information in theform of a quarterly newsletter, the MDSNews, and The MDS Messenger, our e-newsletter. The Foundation’s websiteincludes patient and physician information.Our web address is http://www.mds-foundation.org.

The Centers of Excellence Programdesignates institutions that meet thehighest standards for diagnosis, treatment,and patient care. These Centers form thereferral base for patients seeking first orsecond opinions and/or additional treatmentoptions from experts in MDS. TheFoundation provides patients with a priorityreferral to any Center of Excellence.

Patient advocacy groups are beingformed worldwide, and information isavailable that assists MDS patients and

their loved ones in understanding thesediseases and the treatment options thatare available.

How Can You Help?Funding for the Foundation comes frompharmaceutical companies, Foundationmemberships, memorials, and donations fromprivate individuals. While we have comea long way in the 15+ years since the Foun-dation was established we have a long wayto go. Funding is the base for realizing theFoundation’s research and education goals.

The MDS Foundation is a publiclysupported not-for-profit organization,exempt from federal income tax undersection 501(c)(3) of the IRS code.

How Can We Help You?Please do not hesitate to contact theFoundation if you have any questions.

MDS Headquarters:4573 South Broad StreetSuite 150Yardville, NJ 08620

Within the US: 1-800-MDS-0839Outside the US: 609-298-1035Fax: 609-298-0590www.mds-foundation.org

...a survey indicated a verystrong interest in, and a great need for, developing a permanent working groupof scientists and patientadvocates. Up until thattime, no formal workinggroup was devoted to these syndromes. The MDSFoundation was born.

At the Third International MDS meeting,attended by epidemiologists, pediatricians(yes, this does occur in children),pathologists, hematologists, oncologists,and bone marrow transplantation experts,a survey indicated a very strong interestin, and a great need for, developing apermanent working group of scientists andpatient advocates. Up until that time, noformal working group was devoted to thesesyndromes. The MDS Foundation was born.

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Meeting Announcements

7

THANK YOU for attendingThe 11th International

Symposium on MDS(Edinburgh, UK • May 18–21, 2011)

Educational Webcast and Video Podcastof select presentations are now available on the

MDS Foundation website: www.mds-foundation.org. These expert talks can be accessed from

home/office computers and even oniPod video, iPhone or iPad.

the myelodysplastic syndromes foundation, inc.

Next Generation Approaches forEvaluation and Treatment of MDSDecember 9, 2011Manchester Grand HyattSan Diego, California

A G E N D ABreakfast will be served from 7 to 7:30 am.

7:30–7:40 am Dr. Stephen NimerProgram Overview and Objectives

7:40–8:15 am Dr. Peter GreenbergUpdated Prognostic Assessment ofMDS: The Revised IPSS (IPSS-R)

8:15–8:50 am Dr. Alan ListMolecular Characterization of MDSRisk and Predisposition

8:50–9:25 am Dr. Jacqueline BoultwoodImpaired Ribosome Function andMolecular Biology of the 5q- syndrome

9:25–10:00 am Dr. Ghulam MuftiCombinational Therapy and Use ofNewer Agents in MDS

10:00–10:35 am Dr. Juliet BarkerAdvances in Hematopoietic StemCell Transplantation for MDS:Umbilical Cord Blood Transplantsand Reduced Intensity Conditioning

10:35–11:00 amQuestions/Answers/Discussion

L E A R N I N G O B J E C T I V E S• To know the updated methods for

evaluating prognosis of MDS patients.

• To understand underlying patho-genetic lesions and constitutionalpredispositions in MDS patients.

• To understand the connectionbetween various disorders ofribosomal dysfunction and theirimplications for disease progression.

• To be aware of potentially new usesof combinations of currently availabledrugs for treating MDS and whichnovel agents are being evaluated inclinical trials.

• To understand the current status ofand indications for umbilical cordblood and reduced intensityconditioning as approaches for HSCTin MDS patients.

F A C U L T YPeter L. Greenberg, MDStanford University School of MedicineStanford, California

Juliet Barker, MBBS (Hons), FRACPMemorial Sloan-Kettering Cancer CenterNew York, New York

Jacqueline Boultwood, PhDJohn Radcliffe Hospital, University of OxfordOxford, United Kingdom

Alan F. List, MD H. Lee Moffitt Cancer Center

and Research InstituteTampa, Florida

Ghulam J. Mufti, DM, FRCP, FRCPathKing’s College LondonKing’s College HospitalLondon, United Kingdom

Stephen D. Nimer, MDMemorial Sloan-Kettering Cancer CenterNew York, New York

P R E - R E G I S T R A T I O Nhttps://www.surveymonkey.com/s/2011december9mdsDoes not guarantee admission—pleasearrive early.

December 9, 20117:00–11:00 am

Manchester Grand Hyatt, Elizabeth BallroomSAN DIEGO, CAL IFORNIA

Next Generation Approachesfor Evaluation andTreatment of MDS

T H E M D S F O U N D A T I O N P R E S E N T S

This is a Friday Satellite Symposium preceding the 53rd ASH Annual Meeting.

PRE-REGISTRATION:https://www.surveymonkey.com/s/2011december9mds

Does not guarantee admission—please arrive early.

B R E A K F A S T S Y M P O S I U M

SATELLITE SYMPOSIUM – AMERICAN SOCIETY OF HEMATOLOGY

VISIT THE MDS FOUNDATION BOOTH #1517

8

Patient Forums and Support Groups

Air TransportationOptions for PatientsAngels DonateFrequent Flyer Miles

The need for charitable airline tickets forpatients traveling to distant specializedmedical evaluation, diagnosis or treatmentcontinues to grow.

Angel Flight –For Those in Need

Air transportation resources may beavailable for patients considering travel toone of the participating sites that are part ofthe NIH Rare Diseases.

Angel Flight at NIH provides air trans-portation for patients who are in financialneed and cannot afford the cost of airtravel. The Angel Flight at NIH program isadministered by Mercy Medical Airlift.

If you are interested in finding out ifAngel Flight meets your air transportationneeds, contact Marita Eddy at 301-451-9646or email meddy@mail.nih.gov or checkwww.angelflightatnih.org.

During the previous year, programsadministered by Mercy Medical Airliftprovided almost 10,000 free airline ticketsto financially-stressed patients, but manymore were required. Unfortunately, resourcesto assist all were not available.

Help patients in need of distanttransportation by donating Frequent FlyerMiles and make a difference in the life ofa patient requiring distant specializedtreatment. For further information go tohttp://www.donatefrequentflyermiles.org.

Spreading the Word Worldwide –Patient and Caregiver Education ForumsInternational Patient SupportGroups – We Need Your Help!

The MDS Foundation has embarked ona very exciting project– Patient SupportGroups Worldwide!

Patient Support Groups are an excellentresource in assisting MDS patients and theircaregivers. Those groups in existence havebeen vital to educating public awareness ofthis disease and promoting and supportingscientific research into the treatment andcare of patients with MDS. Unfortunately,only a few such local groups exist, mostly inthe US and the UK, and a few Europeancountries. There is a pressing need toestablish such groups worldwide.

Patient Support Groups havebeen vital to educating publicawareness of this disease andpromoting and supportingscientific research...

The Foundation has devoted selectedmembers of its staff to establish and providetechnical assistance to patient supportgroups outside of the United States, with thegoal of continuing this progress into 2012and beyond.

We have reached out to our InternationalCenters of Excellence to request patientsupport needs specific to their geographicalregions. International patient leaders andall healthcare professionals are alsoencouraged to forward patient supportneeds, specific to you and/or yourgeographical region, to the Foundation atpatientliaison@mds-foundation.org or 609-298-1035. We look forward to hearingfrom you!

Please let us know –we will help!

Established MDS Patient Support GroupsUNITED STATES■ Chicago, Illinois Support Group meets on

the fourth Tuesday of the month from1:30–3:00 pm at Northwest CommunityHospital’s Cancer Service department(lower level), 800 W. Central Road, ArlingtonHeights, Illinois. Contact Kim Jensen atkjensen@nch.org or call 847-618-6914.

■ Puget Sound, Washington Support Groupmeets at the Seattle Cancer Care AllianceCenter. Contact Steve Kessler at smartmony@msn.com or call: 800-877-0168.

■ San Francisco Bay Area Support Groupmeets on the second Sunday of themonth at 2 pm at the Park Blvd.Presbyterian Church, 4101 Park Blvd.,Oakland, California. Contact 800-MDS-0839 for more information.

■ Stanford Cancer Center MDS Patient &Family Support Group meets the 3rdMonday of the month, 6:30–8:00 pm atthe Stanford Cancer Center, 875 BlakeWilbur Dr., Palo Alto, 2nd Floor ConferenceRoom CC2105. Group Leader: LennFechter, RN, BSN 650-725-0744.

CANADA■ Toronto, Ontario Support Group

Contact William Pearson atwilliam.pearson@sympatico.ca or call905-561-6999 for information onupcoming meetings.

JAPAN■ Japanese Support Group

Email: mdsrenraku@yahoo.co.jpfor more informationWebsite (only in Japanese):http://www.geocities.jp/mdsrenraku

EUROPE (Countryside Groups)■ France: Association Connaître et

Combattre les Myélodysplasies■ United Kingdom: UK MDS Patient Forum■ Czech Republic: Czech Republic MDS Forum

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MDS Patients Share Their Stories...

MDS FoundationGlobal Patient SupportGroups InitiativeCanadians at theMDS Symposium inEdinburgh, Scotland

William Pearson

As part of the 11th MDS InternationalSymposium on Myelodysplastic Syndromes,there was a one-day session that broughttogether patients from different countries inthe hope of establishing successful MDSpatient support groups worldwide.

Participating countries were Belgium,Brazil, Canada, Denmark, Greece, Italy,Japan, the Netherlands, Romania andSwitzerland. Attendees from Canadaincluded Dr. Karen Yee, and nurses CindyMurray and Nancy Pringle from PrincessMargaret Hospital in Toronto; and Bill andLisa Dodd, and William and Janet Pearsonrepresenting patients and family members.

Presentations highlighting the functionsof support groups were made by RodneyTaylor and Sophie Wintrich representingthe MDS UK Patient Support Group, andPatrick Festy from the CCM France Patient

SUBMITTED FROM USASUBMITTED FROM HAMILTON, ONTARIO, CANADA

William Pearson, Dr. Karen Yee, Nurse Nancy Pringle, Janet Pearson, Lisa and Bill Dodd

The Loch Ness Monster (Nessie)

Support Group. I was very impressed withthe extent of information provided by theMDS UK Support Group website:www.mdspatientsupport.org.uk.

MDS and Quality of Life was discussed –covering the negative and positive impact ofMDS. Speakers on this subject were NatalieSinger, Beatson Oncology Centre, Glasgow;Jeff Horn, Aberdeen Royal Infirmary; andPhyllis Paterson, Addenbrooke’s Hospital.

Other topics included:

What Exactly is MDS, Symptoms, and How isit Diagnosed – Dr. Sally Killick, ConsultantHaematologist, Royal Bournemouth Hospital.

Current Treatments in MDS, the ScottishPerspective – Dr. Dominic Culligan, ConsultantHaematologist, Aberdeen Royal Infirmary.

Understanding Clinical Trials and What isAvailable – Dr. Mark Drummond, ConsultantHaematologist and Honorary Senior ClinicalLecturer, Beatson Oncology Centre.

General Questions and Answers Session –Dr. S. Killick, Dr. D. Culligan, Dr. M.Drummond, Natalie Singer, Jeff Horn andPhyllis Paterson.

These topics were followed by a generaldiscussion from each of the participants.What was most interesting was the commonthread of issues and problems – regardlessof the country.

The group also discussed the lack ofknowledge of MDS in the medical fraternity,and the lack of support groups in manycountries. As a qualified first connectionregarding MDS, I am personally aware ofthis. I talk to MDS patients throughout NorthAmerica, as well as to their caregivers.

We also examined the importance of theMDS Centers of Excellence. They would be agood source to foster the formation of supportgroups in areas where there are none.

As a bonus we were afforded time toexplore Edinburgh and the surrounding areas.Some of the highlights of the tour includedthe city itself, Edinburgh Castle, and a trip toLoch Ness. Much delight came from thephoto I took of the Lock Ness Monster – ithas put a smile on many faces.

The whole trip was a great experience onall accounts. For the most part, all issueswith MDS are similar throughout the world.

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To Live With MDSAat van den Bos

Since halfway through the nineties of thepast century I have regulary had serioustiredness symptoms. Visiting my familydoctor, he used to give me the advice toexercise more, go walking, sporting, and soon, and spend some weeks at home.

In 2001, I was again very tired andalmost fainted while we were shopping inthe city center. Again, I went to my familydoctor. This time he took it seriously. My HBwas 11.8. Ferrous drinks didn’t work, andintestinal examination gave no clarity.

Then I was sent to an internist andhaematologist. He made the diagnosis inAugust 2001: a kind of MDS. This gave mea big shock and threatened me. He made itclear that there was no sustainable recoveryof this illness. I asked for a second opinion atthe Vrije Universiteit (VU University) Hospitalin Amsterdam. They confirmed the diagnosis.

I stood under the supervision of myinternist and haematologist for 4 years until2005, but regularly kept in contact with theVU University Hospital. In the meantime, myHB declined slow but steady: 10.5 in 2004.

On my holiday I tested my endurance bymountaineering in Austria. I succeeded inreaching the top—but don’t ask me how!

During this process of illness, I wasdeclared unfit for work. It started with 20%,then 40%, and at least 60%. In 2007 I retired.

When my HB had declined to 9.3, mytreatment was taken over by the VUAcademic Hospital in Amsterdam. It was agood feeling to know that my treatingphysician, Dr. A.A. van de Loosdrecht, knewa lot about my disease.

In December 2006, I began EPO-treatment(2 injections a week by myself). My HB raisedslowly to 10.1.

After a good two years there was noresponse anymore. My HB declined again to9.3 and at least 8.5 (!). You feel very tired allday long and get a very passive behaviour.

SUBMITTED FROM USASUBMITTED FROM NETHERLANDS

Aat van den Bos, MDS Patient

At that moment—just in time—a newmedicine was made available. I was askedto participate in an experiment with the newmedicine: Lenalidomide.

This experiment is still ongoing (for twoyears now). For the moment, it has had avery positive result for me. My HB has raisedabove 12.8 (last control: 14.1!).

If this situation remains—and that is thebig question—I feel healthy and can livevery well with my kind of MDS (RARS).Walking 10 km, light mountaineering,getting upstairs, and so on are no problemfor me at the moment.

The MDSF Launches Re-Designed WebsiteWe have launched a new and improvedwebsite featuring major enhancementsto our popular website. The new home-page has been simplified to showcasefeatured content and breaking news. Weupdated our design adding features tomake information easier to read andfind, and organized information every-thing under key headings to help you

quickly locate specific topics. You’ll findthe latest news about our supportservices and free educational materialsto help you, your loved ones or yourpatients better cope with MDS.

Get Connected with theMDS Foundation Online!

www.mds-foundation.org

OUR SITE TO SEE!

Perhaps I will be declared recovered fromMDS. Who knows?

11

Cookbooks For a Cause“Annie’s Sweet Tooth” Raises Money for the MDS Foundation

Patient Tributes

WHAT:Cookbook created by Nancy CosenzaNussbaum in loving memory of hersister, Ann Cosenza Hallberg.

INCLUDES:Recipes for appetizers & beverages,soups & salads, vegetables & sidedishes, entrees, breads & rolls, desserts,cookies & candy, and more.

ALSO:Cooking glossary, baking and cookinghints, and more.

COST:$13.00 ($10 plus $3 shipping andhandling).

ORDER:1-800-MDS-0839, or email:AnniesSweetTooth@gmail.com

All revenue from the sales of this cookbookwill be donated to the MDS Foundation.A special thank you to Tony and LondieCosenza, Nancy’s parents, for underwritingthe cost of publishing this collection offavorite recipes.

Ann Cosenza Halberg: 7/1/1959 – 11/21/2009

Get Involved...We applaud Nancy and Paul for theirvaliant efforts. They have both foundways of keeping their loved one’smemories alive by giving to the MDSFoundation and helping patients andfamilies benefit from our educationaland patient support programs.

Become a member of our MDSF Devel-opment Committee. Whether you areplanning a fundraising event or raisingcontributions in memory of a loved one, orcelebrating your loved one’s survival,please consider joining our developmentcommittee to brainstorm for help inplanning, for creative ideas, for materialsand other support by emailing TraceyIraca: tiraca@mds-foundation.orgor call her at 800.637.0839.

The work of the Foundation, includingresearch and education, greatly benefitsfrom donations like Nancy’s and Paul’s.Hopefully new treatments, and eventuallya cure for MDS will result from theresearch efforts that are integral to theFoundation’s work.

Melissa Wenzel displays the tournament t-shirt.

A special thank you to Paul Wenzelwho held his 4th Annual Golf Tournamentin memory of his beloved mother,Karen A. Wenzel, who passed away onJune 19th, 2006. This year’s event tookplace at the Kingston Fairways inKingston, New Hampshire. The eventincluded a 4-person scramble, BBQ andawards reception. All proceeds raisedwere donated to the MDS Foundation.

Paul Wenzel: This is my way of trying tohelp by raising funds... to someday find acure for MDS and other blood relateddiseases. Mostly though, it’s to keep thememory of my mother alive. Putting togetherthe golf tournaments each summer givesme the chance to talk about her, andremember all the good times we hadtogether. We have a wonderful group offamily and friends that come out each yearto support MDS and to remember what awonderful person my mother was. I love herand miss her everyday!

Paul and his mother, Helen.

4 Years of GolfTournaments RaiseMore Than $15,000

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Lesson Learned fromMy Grandfather (Pepa)

“Learn from yesterday, live for today,hope for tomorrow. The important thingis not to stop questioning.”

– Albert Einstein

Erin Demakos, RN

The above is a quote by Einstein, and it isindeed, excellent advice. Einstein was ofcourse one of the greatest scientists whoever lived, if not the greatest. This is a quoteI remember my grandfather saying to meafter spending the entire day at the bloodbank receiving 2 units of red blood cells.This was something he did every week ashis disease advanced. My grandfather, animmigrant from Belfast, Ireland, was anengineer by trade, working at the AmericanChickle Factory in Astoria, Queens, NY. Heworked well into his late 70s. He loved it —and by all accounts, continuing to work wellpast the age of retirement likely helpedextend his life. He was a devout Catholic,very much involved in his church and localcommunity. Every day he would spend histime helping those in need residing in theapartment building where he had lived forover 50 years. I think it would be best if Istart from the beginning—even now it feelslike yesterday.

Once upon a time, long ago, in the fall of1987, I left my position as a Critical CareNurse in the Surgical Cardiac Intensive CareUnit at Mount Sinai School of Medicine in NYto pursue a new career working as aHematology/Oncology Clinical ResearchNurse in the Department of NeoplasticDiseases at Mount Sinai, under the directionof Drs. James F. Holland and Lewis R.Silverman. Within the same month ofbeginning my new role, Dr. Silvermandiagnosed my grandfather with MDS. At thatpoint, I had been working as the PrimaryResearch Nurse Coordinator on a newnational investigational trial of azacitidine(CALGB study #8421) for patients diagnosedwith MDS. I was hoping my grandfathercould be enrolled in this trial and receive this

new treatment. Unfortunately, due to hisunderlying co-morbidities, he was noteligible. I was in shock, frustrated, and afraidof the unknown outcome and coursepredicted for my grandfather. Back thenwe did not have well-established morphologicclassification systems for MDS, nor did weunderstand their implications for clinicalmanagement. In addition, we did not havedefined NCCN Practice Guidelines forpatients with MDS or the IPSS scoring system,and there were no effective treatments.As a hematology nurse I was frustrated thatI could not help him.

For over a year and a half my grandfatherendured monthly bone marrow aspirationsand biopsies. At the end of the procedure hewould say, “Thank you. I hope and pray thatyou can learn from my disease to helpothers”. His blood and bone marrow cellswould be studied in Dr. Silverman’s lab alongwith other patients diagnosed with MDS. Heencouraged us every day to persevere, workhard, and continue to support the efforts inthe fight for a cure. Myelodysplastic diseaserobbed my grandfather of many productiveyears of life with his family and friends.

My grandfather was a true believer insetting your mind on something and notgiving up until it is accomplished. Becauseof this, he was able to motivate andencourage many others to persevere in the

face of adversity or discouragement. Thisquality was what helped him the most as heneared the end of his own life. Dr. Silvermanand I, along with our team, did persevere.Dr. Silverman served as the PrincipalInvestigator and I served as the lead nurseCo-investigator on 2 additional NationalCooperative Group trials on Azacitidine(CALGB# 8921 and 9221), which ultimatelylead to its approval (Vidaza); the first FDAapproved therapy for patients with MDS. Itwas a team effort! More progress has beenmade in the past 7 years than in the 30years since MDS was differentiated from theacute leukemias. As advances in technologyand biology have converged, personalizedcancer medicine has become possible. Nowwe can offer hope to not only improve thequality of life, but to also extend the lives forpatients with MDS with effective treatments– those that are FDA approved and manynew novel drugs being studied in combination.

My grandfather (Pepa), has always been,and will always be a huge part of my life. Hetaught me to never back away from achallenge. I will continue to work everyday inthe field of MDS and contribute to futureadvances in treatment. And so I say to mygrandfather (my loving Pepa) and to the manypatients and families suffering with MDS—Thank you for enduring.Thank you for fighting.And thank you for giving me the hope tocontinue my dedication to improving theoutcome and quality of life for patients,families and caregivers impacted with thischronic disease.

A Nurse’s Story

Erin Demakos and her Grandfather; 1986

Erin P. Demakos, RN, CCRN today: AdministrativeDirector, Myelodysplastic Disease Center andMPD Program, Mount Sinai School of Medicine

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Would you like your treatment center to become part of the referral system for MDS patients and be designated as a Centerof Excellence? To be recognized as a Center of Excellence, an institution must have the following:■ An established university (or equivalent) program■ Recognized morphologic expertise in MDS■ Available cytogenetics and/or molecular genetics

UNITED STATESARIZONAMayo Clinic HospitalPhoenix, ArizonaRuben Mesa, MD/James Slack, MD

University of ArizonaArizona Cancer CenterTucson, ArizonaDaruka Mahadevan, MD, PhD

CALIFORNIACedars-Sinai Medical CenterUCLA School of MedicineLos Angeles, CaliforniaH. Phillip Koeffler, MD

City of Hope National Medical CenterDuarte, CaliforniaStephen J. Forman, MD

Stanford University Medical CenterStanford, CaliforniaPeter L. Greenberg, MD

UCLA Center for Health SciencesLos Angeles, CaliforniaGary J. Schiller, MD

University of Southern CaliforniaKeck School of MedicineLos Angeles, CaliforniaCasey L. O’Connell, MD

FLORIDAAll Children’s HospitalSt. Petersburg, FloridaGregory Hale, MD

Mayo ClinicJacksonville, FloridaAlvaro Moreno-Aspitia, MD

University of FloridaShands HospitalGainesville, FloridaChristopher R. Cogle, MD

University of South FloridaH. Lee Moffitt Cancer CenterTampa, FloridaAlan F. List, MD

GEORGIAEmory Winship Cancer InstituteEmory University School of MedicineAtlanta, GeorgiaAmelia Langston, MD

The Blood and Marrow Transplant Program at Northside HospitalAtlanta, GeorgiaAsad Bashey, MD

ILLINOISLoyola University ChicagoCardinal Bernardin Cancer CenterMaywood, IllinoisScott E. Smith, MD, PhD

Robert H. Lurie Comprehensive Cancer Center of Northwestern UniversityFeinberg School of MedicineChicago, IllinoisOlga Frankfurt, MD

Rush University Medical CenterChicago, IllinoisStephanie A. Gregory, MDJamile Shammo, MD

University of ChicagoMedical CenterChicago, IllinoisRichard A. Larson, MD

INDIANAIndiana University Medical CenterIndianapolis, IndianaLarry Cripe, MD

MARYLANDJohns Hopkins University School of MedicineBaltimore, MarylandSteven D. Gore, MDCharles S. Hesdorffer, MD

University of MarylandGreenebaum Cancer CenterBaltimore, MarylandMaria R. Baer, MDIvana Gojo, MD

MASSACHUSETTSDana-Farber Cancer InstituteBoston, MassachusettsRichard M. Stone, MDDavid P. Steensma, MD

Tufts University School of MedicineTufts Medical CenterBoston, MassachusettsKellie Sprague, MD

MICHIGANBarbara Ann KarmanosCancer InstituteWayne State UniversityDetroit, Michigan Charles A. Schiffer, MD

William Beaumont HospitalCancer CenterRoyal Oak, MichiganIshmael Jaiyesimi, MD

MINNESOTAMayo ClinicRochester, MinnesotaMark R. Litzow, MD

University of Minnesota Medical CenterFairview University of Minnesota Medical SchoolMinneapolis, Minnesota Erica D. Warlick, MD

MISSOURI

Washington University School of MedicineSiteman Cancer CenterSt. Louis, MissouriJohn F. DiPersio, MD, PhD

NEBRASKA

University of NebraskaMedical CenterOmaha, NebraskaLori Maness, MD

NEW JERSEY

The Cancer Center of Hackensack University Medical CenterHackensack, New JerseyStuart Goldberg, MD

NEW YORKAlbert EinsteinCollege of Medicine Cancer CenterBronx, New YorkAmit Verma, MD

Columbia UniversityMedical CenterNew York, New YorkAzra Raza, MD

■ Ongoing research, includingInstitutional Review

■ Board–approved clinical trials

■ Documentation of peer-reviewed publications in the field■ The ability and intention to register patients in the MDS

International Registry database

Please contact the Foundation for further information and an application form for your center.

The following centers have qualified as MDS Centers of Excellence:

Memorial Sloan-Kettering Cancer CenterNew York, New YorkStephen D. Nimer, MD

Mount Sinai School of MedicineNew York, New YorkLewis R. Silverman, MD

New York Medical College/ Westchester Medical CenterZalmen A. Arlin Cancer CenterValhalla, New YorkKaren Seiter, MD

North Shore University HospitalLake Success, New YorkSteven L. Allen, MD

Roswell Park Cancer CenterBuffalo, New YorkJames E. Thompson, MD

University of Rochester Cancer CenterRochester, New YorkJohn M. Bennett, MD

Weill Medical College of Cornell UniversityNew York Presbyterian HospitalNew York, New YorkEric J. Feldman, MD

NORTH CAROLINADuke University Medical CenterDurham, North CarolinaCarlos M. deCastro, MD

Wake Forest UniversitySchool of MedicineComprehensive Cancer CenterWinston-Salem, North CarolinaBayard L. Powell, MD

OHIOCleveland Clinic FoundationTaussig Cancer CenterCleveland, OhioJaroslaw Maciejewski, MD, PhD

The Ohio State ComprehensiveCancer CenterJames Cancer Hospital andSolove Research InstituteColumbus, OhioAlison R. Walker, MD

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PENNSYLVANIAThe Western PennsylvaniaCancer InstitutePittsburgh, PennsylvaniaJames M. Rossetti, DO

Thomas Jefferson UniversityKimmel Cancer CenterPhiladelphia, PennsylvaniaEmmanuel C. Besa, MD

University of PennsylvaniaCancer CenterPhiladelphia, PennsylvaniaSelina Luger, MD

UPMC Cancer CentersUniversity of PittsburghCancer InstitutePittsburgh, PennsylvaniaAnastasios Raptis, MD

TENNESSEEVanderbilt University Medical CenterNashville, TennesseeMadan Jagasia, MDStephen Strickland, MD

TEXASCancer Care Centers of South TexasSan Antonio, TexasRoger Lyons, MD

Cancer Therapy & Research CenterUniversity of TexasHealth Science CenterSan Antonio, TexasSwaminathan Padmanabhan, MD

Southwest Regional Cancer CenterAustin, TexasRichard Helmer, III, MD

University of TexasMD Anderson Cancer CenterHouston, TexasGuillermo Garcia-Manero, MDHagop Kantarjian, MD

WASHINGTONFred HutchinsonCancer Research CenterUniversity of WashingtonSeattle Cancer Care AllianceSeattle, WashingtonJoachim Deeg, MD/Elihu Estey, MD

WASHINGTON, DCGeorgetown University HospitalLombardi Comprehensive Cancer CenterWashington, D.C.Catherine Broome, MD

WISCONSINMedical College of WisconsinBone Marrow Transplant ProgramMilwaukee, WisconsinParameswaran Hari, MD

University of WisconsinMadison Medical SchoolMadison, WisconsinMark B. Juckett, MD

OUTSIDE THE UNITED STATESAFRICAHôpital Aziza OthmanaTunis, TunisiaBalkis Meddeb, MD

University of Cape TownGroote Schuur HospitalCape Town, South AfricaNicolas Novitzky, MD, PhD

ARGENTINASanatorio Sagrado del CorazónBuenos Aires, ArgentinaMarcelo Iastrebner, MD

AUSTRALIAPeter MacCallum Cancer InstituteUniversity of MelbourneEast Melbourne, AustraliaJohn F. Seymour, MD

University of TasmaniaRoyal Hobart HospitalHobart, Tasmania, AustraliaRaymond M. Lowenthal, MD

AUSTRIAUniversity Hospital of InnsbruckInnsbruck, AustriaReinhard Stauder, MD

University of ViennaVienna, AustriaPeter Valent, MD

BELGIUMAZ Sint-Jan AVBrugge, BelgiumDominik Selleslag, MD

University Hospital LeuvenLeuven, BelgiumMichel Delforge, MD, PhD

BRAZILAC Camargo Hospital –Cancer CenterSão Paulo, BrazilLuiz Fernando Lopes, MD, PhD

Hemocentro da UNICAMPUniversity of CampinasCampinas, Brazil Irene Lorand-Metze, MD

Servico de Hematologia do Hospitaldas Clinicas da Faculdade de Medicina da Universidadede São PauloSão Paulo, BrazilElvira R.P. Velloso, MD, PhD

Universidade Federal de CearáCeará, BrazilSilvia Maria M. Magalhães, MD, PhD

Universidade Federal de São PauloSão Paulo, BrazilMaria de Lourdes Chauffaille, MD, PhD

CANADAPrincess Margaret HospitalToronto, Ontario, CanadaKaren Yee, MD

Toronto SunnybrookRegional Cancer CentreToronto, Ontario, CanadaRichard A. Wells, MD

University of TorontoHospital for Sick ChildrenToronto, Ontario, CanadaYigal Dror, MD

CHINAInstitute of Hematology and Blood Diseases HospitalChinese Academy of Medical SciencesTianjin, ChinaZhijian Xiao, MD

CROATIAUniversity Hospital Center ZagrebSchool of MedicineZagreb, CroatiaBoris Labar, MD, PhDRanka Serventi-Seiwerth, MD

CZECH REPUBLICInstitute of Hematology& Blood TransfusionPrague, Czech RepublicJaroslav Cermák, MD, PhD

DENMARKOdense University HospitalThe University of Southern DenmarkOdense, DenmarkGitte Birk Kerndrup, MD

Rigshospitalet National University HospitalCopenhagen, DenmarkLars Kjeldsen, MD, PhD

University of ÅrhusThe University HospitalÅrhus, DenmarkMette Skov Holm, MD, PhD

FRANCECentre Henri BecquerelRouen University School of MedicineRouen, FranceAspasia Stamatoullas, MD

Centre Hospitalier Universitaire (CHU) de Angers Service des Maladies du SangAngers, FranceNorbert Ifrah, MD

Centre Hospitalier Universitaire(CHU) de GrenobleGrenoble, FranceJean-Yves Cahn, MD

Centre HospitalierUniversitaire (CHU) de LimogesHôpital DupuytrenLimoges, FranceDominique Bordessoule, MD

Centre HospitalierUniversitaire (CHU) de NancyNancy, FranceAgnés Guerci-Bresler, MD, PhD

Hôpital Avicenne/University Paris XIIIBobigny, FrancePierre Fenaux, MD

Hôpital Claude Huriez,CHU Lille Servicedes Maladies du SangLille, FranceBruno Quesnel, MD

Hôpital Cochin/University Paris VParis, FranceFrancois Dreyfus, MD

Hôpital Saint Louis/University Paris VIIParis, FranceChristine Chomienne, MD, PhD

Institut Paoli-CalmettesMarseille, FranceNorbert Vey, MD

GERMANYGeorg-August-Universität GöttingenGöttingen, GermanyDetlef Haase, MD, PhD

Hannover Medical SchoolMedizinische Hochschule HannoverHannover, GermanyArnold Ganser, MD

Heinrich-Heine Universität Düsseldorf University HospitalDüsseldorf, GermanyUlrich Germing, MD

Johann Wolfgang Goethe UniversitätFrankfurt Main, GermanyGesine Bug, MD

Klinikum Rechts der IsarTechnical University of MunichMunich, GermanyKatharina Götze, MD

MLL Münchner Leukämielabor Munich, GermanyTorsten Haferlach, MD

Saarland University Medical CenterHomburg/Saar, GermanyUlrich Mahlknecht, MD, PhD

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St. Johannes HospitalHeinrich-Heine Universität Duisburg, GermanyCarlo Aul, MD, PhD

Albert-Ludwigs-Universität FreiburgFreiburg, GermanyMichael Lübbert, MD, PhD

Universität HamburgHamburg, GermanyNicolaus Kröger, MD, PhD

UniversitätsklinikumCarl Gustav CarusDresden, GermanyUwe Platzbecker, MD

University Children’s HospitalFreiburg, GermanyCharlotte Niemeyer, MD

University of CologneCologne, GermanyKarl-Anton Kreuzer, MD

Universitätsklinikum Benjamin FranklinBerlin, GermanyOlaf Hopfer, MD

University Hospital MannheimMannheim, GermanyWolf-Karsten Hofmann, MD, PhD

GREECEG. Papanikolaou GeneralHospital of ThessalonikiUniversity of ThessalonikiThessaloniki, GreeceCharikleia Kelaidi, MD

Patras University HospitalPatras, GreeceArgiris Symeonidis, MD

University of Athens Laikon HospitalAthens, GreeceNora Viniou, MD

University General Hospital AttikonAthens, GreeceVassiliki Pappa, MD

HUNGARYSemmelweis University School of MedicineBudapest, HungaryJudit Várkonyi, MD, PhD

INDIATata Medical Centre Kolkata, IndiaCol (Dr.) Deepak Kumar Mishra, MD

Tata Memorial HospitalMumbai, IndiaPurvish Parikh, MD

IRELANDAdelaide and Meath HospitalDublin, IrelandHelen Enright, MD

ISRAELTel-Aviv SouraskyMedical CenterTel-Aviv, IsraelMoshe Mittelman, MD

ITALYCentro di RiferimentoOncologico di Basilicata (CROB)Rionero in Vulture (PZ), ItalyPellegrino Musto, MD

Istituto di EmatologiaUniversita’ Cattolica Sacro CuoreRoma, ItalyGiuseppe Leone, MDMaria Teresa Voso, MD

University of FlorenceAzienda OSP CareggiFlorence, ItalyValeria Santini, MD

University of PaviaMedical SchoolPavia, ItalyMario Cazzola, MD

University Tor VergataOspedale S. EugenioRoma, ItalyElisabetta Abruzzese, MD, PhD

JAPANKyoto University HospitalKyoto, JapanAkifumi Takaori, MD

Nagasaki University HospitalSchool of MedicineAtomic Bomb Disease InstituteNagasaki City, JapanMasao Tomonaga, MD

Nippon Medical SchoolTokyo, JapanKiyoyuki Ogata, MD, PhD

Saitama InternationalMedical CenterSaitama Medical UniversityHidaka, Saitama, JapanAkira Matsuda, MD

Tokyo Medical CollegeTokyo, JapanKazuma Ohyashiki, MD, PhD

KOREACatholic Blood and Marrow Transplantation CenterThe Catholic University of KoreaSeoul, KoreaYoo-Jin Kim, MD

Seoul National University HospitalSeoul National UniversityCollege of MedicineSeoul, KoreaDong Soon Lee, MD, PhD

THE NETHERLANDSUniversity Medical CenterNijmegen St. RadboudNijmegen, The NetherlandsTheo J.M. de Witte, MD, PhD

Vrije Universiteit Medical CenterAmsterdam, The NetherlandsGert J. Ossenkoppele, MD, PhD

POLANDJagiellonian University Collegium MedicumKraków, PolandAleksander Skotnicki, MD, PhD

PORTUGALHospital de Santa MariaLisbon, PortugalJoao F. Lacerda, MD

ROMANIAFundeni Clinical InstituteBucharest, Romania

SAUDI ARABIAKing Faisal Specialist Hospital & Research CentreRiyadh, Saudi ArabiaMahmoud Deeb Aljurf, MD

King Khaled University HospitalKing Saud UniversityRiyadh, Saudi ArabiaAk Almomen, MD

SINGAPORESingapore General HospitalSingaporeLay-Cheng Lim, MD

SPAINHospital Universitario de SalamancaSalamanca, SpainConsuelo del Cañizo, MD, PhD

Hospital Universitario La FeValencia, SpainMiguel A. Sanz, MD, PhD

Hospital UniversitarioVall d’Hebron Laboratorio del Citologia-CitogéneticaBarcelona, SpainMaria Teresa Vallespi-Sole, MD, PhD

SWEDENKarolinska InstitutetHuddinge University HospitalStockholm, SwedenEva Hellström-Lindberg, MD, PhD

TAIWANNational TaiwanUniversity HospitalTaipei, TaiwanHwei-Fang Tien, MD, PhD

THAILANDKing ChulalongkornMemorial HospitalPathumwan, Bangkok, ThailandTanin Intragumtornchai, MD

TURKEYAnkara University School of Medicine HospitalAnkara, TurkeyOsman Ilhan, MD

UKRAINEResearch Center for Radiation MedicineKiev, UkraineDimitry Bazyka, MD

UNITED KINGDOMAberdeen Royal InfirmaryAberdeen UniversitySchool of MedicineForesterhill, Aberdeen, ScotlandDominic Culligan, MD

Addenbrooke’s HospitalCambridge University HospitalsNHS Foundation TrustCambridge, United KingdomAlan J. Warren, PhD, FRCP, FRCPath

King’s College HospitalUniversity of LondonLondon, United KingdomGhulam J. Mufti, MD

Queen Elizabeth HospitalUniversity Hospital BirminghamNHS TrustBirmingham, United KingdomCharles Craddock, MD

Radcliffe Hospitals and University of OxfordOxford, United KingdomParesh Vyas, MD

Royal Bournemouth HospitalBournemouth, United KingdomSally Killick, MD

St. James’s University HospitalSt. James’s Institute of OncologyLeeds, United KingdomDavid T. Bowen, MD

University Hospital of WalesCardiff, WalesJonathan Kell, MD

16

New ResearchProtocol ListingNATIONAL CANCER INSTITUTE TRIALS

As we go to press the National CancerInstitute (NCI) has listed more than 100clinical trials that focus on myelodysplasticsyndromes. Full study information on thesetrials is available at www.cancer.gov. Thisinformation includes basic study information,study lead organizations, study sites, andcontact information. To access the information:■ Log on to www.cancer.gov■ Click on “Search for Clinical Trials”■ Click on “Type of Cancer” and type in

‘myelodysplastic syndromes’■ Hit search

This search will provide you with all thetrials currently underway in MDS. You mayalso sort by trials that only focus on treatmentor trials that only focus on supportive care.

To view listings of additional studiesyou can log onto www.clinicaltrials.gov.For telephone support, call the NationalCancer Institute at 1-800-4-CANCER.

Clinical Research TrialWith Rigosertib(ON 01910.Na)Now Enrolling NCT01241500

We would like to announce a clinical trialstudy for Myelodysplastic Syndrome (MDS)patients who have relapsed after, become re-fractory to or intolerant to Vidaza® (azacitidine)or Dacogen® (decitabine) treatment.

The accrual of patients is ongoing for therigosertib (ON 01910.NA) trial in myelo-dysplastic syndrome (ONTIME) clinical trialNCT01241500.

The primary purpose of this study is tocompare overall survival (OS) in patientsreceiving rigosertib plus best supportive care(BSC) to OS of patients receiving BSC in apopulation of patients with MDS with excessblasts (5% to 30% bone marrow blasts)having failed, being intolerant, or relapsingafter azacitidine or decitabine treatment.

Rigosertib is an investigational agentbeing evaluated for MDS, other bloodmalignancies and solid tumors. Patients inboth the rigosertib arm and the control armwill be monitored closely throughout the trialand hospital stays are not required.

In an effort to accelerate the clinicaldevelopment of rigosertib for myelodysplasticsyndromes the MDS Foundation will beassisting the sponsor and would appreciatehearing from you.

If you are a physician or health careprovider and would like to refer a patientfor enrollment into this clinical trial OR ifyou are an MDS patient who has failed,become intolerant, or relapsed after Vidaza®

(azacitidine) or Dacogen® (decitabine) treat-ment, please call the ONTIME Trial Help Lineat 1-855-609-6564.

Virginia G. Piper Cancer CenterScottsdale, AZPI: Mahesh Seetharama, MD

Desert Hematology Oncology Rancho Mirage, CaliforniaPI: David Young, MD

Stanford Cancer CenterPalo Alto, CAPI: Peter Greenberg, MD

Aventura Healthcare AssociatesAventura, FLPI: Enrique Davila, MD

Integrated Community OncologyJacksonville, FLPI: Lisa Reale, MD

Information on Clinical Trials

Mount Sinai Cancer CentersMiami Beach, FLPI: Jose Lutzky, MD

Martin Memorial Cancer CenterStuart, FLPI: Guiellermo Abesada-Terk, MD

Lake County Oncologyand HematologyTavares, FLPI: Maen A. Hussein, MD

University of ChicagoMedical CenterChicago, ILPI: Lucy Godley, MD

Rush University Medical CenterChicago, ILPI: Jamile Shammo, MD

Edward Kaplan MD & Assoc.Skokie, ILPI: Marlon Kleinman, MD

Mary Bird Perkins Cancer CenterBaton Rouge, LAPI: Bryan Bienvenu, MD

Univ. of MarylandGreenbaum Cancer CenterBaltimore, MarylandPI: Maria Baer, MD

Johns Hopkins HospitalBaltimore, MarylandPI: Steven D. Gore, MD

Dana-Farber Cancer InstituteBoston, MAPI: David Steensma, MD

Diagnosis with MDS relapsing after,

refractory to or intolerant to

azacitidine or decitabine

Rigosertib 1800 mg/24 h× 3 days every 2 weeks

+BEST SUPPORTIVE CARE

(n=180)OVERALLSURVIVAL(n=270)

BESTSUPPORTIVE CARE

(n=90)

FOLLOW-UP

RANDOMIZATION

Trial Schema

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Online Search Tool for Clinical Trials

TrialCheck is another online search tool that helps you gather information aboutcancer clinical trials to discuss with your doctor. This user-friendly tool allows you tosearch for trials according to your type of cancer and according to your zip code. Thiswill help you locate physicians and hospitals near your home that offer trials.

TrialCheck searching is based on nine simple questions. Depending upon the answersyou provide, TrialCheck generates a list of trials in which you may be eligible to enroll.

www.CancerTrialsHelp.org

Announcing NewClinical TrialsNAME OF INSTITUTION:Novartis Pharmaceuticals

TRIAL NUMBER: NCT00940602

Title of Trial or Description:Myelodysplastic Syndromes (MDS) EventFree Survival With Iron Chelation TherapyStudy (TELESTO) A Multi-center, Randomized, Double-blind, Placebo-controlled Clinical Trial ofDeferasirox in Patients With Myelodys-plastic Syndromes (Low/Int-1 Risk) andTransfusional Iron OverloadCurrently Recruiting Participants.The primary purpose of this study is toprospectively assess the efficacy andsafety of iron chelation therapy withdeferasirox compared to placebo inpatients with myelodysplastic syndromes(low/int-1 risk) and transfusional ironoverload.

Contact the Novartis Clinical TrialsHotline at 800-340-6843 or go towww.clinicaltrials.gov for additional

information and to view the active sites.

NAME OF INSTITUTION:Celgene CorporationTRIAL NUMBER: NCT01029262Title of Trial or Description:A Study of Lenalidomide Versus Placeboin Subjects With Transfusion DependentAnemia in Low Risk Myelodysplastic Syn-drome (MDS) Without Del 5Q (MDS-005)

Currently Recruiting Participants.

The primary purpose of this study is tocompare the efficacy of Lenalidomide(Revlimid®) versus placebo in achievingred blood cell transfusion independencein the overall study population and in apre-specified subgroup of patientswith an erythroid differentiation geneexpression signature predictive ofLenalidomide response.

Access www.clinicaltrials.govfor additional information.

New Research Protocol ListingsThe MDS Foundation wants you to know about clinical trials of investigational

treatment options for patients with MDS and has updated its International Clinical Trialslist on our website and for distribution.

Please contact us for a detailed listing featuring new protocols:Website: www.mds-foundation.orgEmail: patientliaison@mds-foundation.org or call 800-MDS-0839 and the current clinicaltrials will be sent to you.

Clinical trials often have very specific eligibility requirements. Please talk with yourdoctor to help decide which, if any, trials might be right for you.

Please note that the information is provided strictly as a resource and is not anendorsement of any physician, institution, or treatment.

University of Michigan Cancer CenterAnn Arbor, MIPI: Dale Bixby, MD, PhD

Mayo ClinicRochester, MNPI: Aref Al-Kali, MD

Saint Louis Cancer CenterSt. Louis, MOPI: Mark J. Fesler, MD

Hackensack UniversityMedical CenterHackensack, NJPI: Stuart Goldberg, MD

Weill Cornell Medical CollegeNew York, NYPI: Gail J. Roboz, MD

Cleveland ClinicCleveland, OHPI: Mikkael Sekeres, MD

Medical Universityof South CarolinaCharleston, SCPI: Robert K. Stuart, MD

Bon Secours St. Francois Health Greenville, SCPI: Gary Spitzer, MD

University of Texas –MD Anderson Cancer CenterHouston, TXPI: Guillermo Garcia-Manero, MD

Cancer Care Centersof South TexasSan Antonio, TXPI: Roger Lyons, MD

St. Mary’s Medical CenterHuntington, WVPI: Arvinder Bir, MD

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Highlights of LatestLiterature in MDS Suneel D. Mundle, PhDAnuj Marathe

Listed below are citations of some newpublications relevant to MDS (pathogenesis,clinical characterization, management, etc.).To access the complete article log on towww.pubmed.gov.

DIAGNOSIS:1. Naqvi K et al. Implications of discrepancy in

morphological diagnosis of myelodysplasticsyndrome between referral and tertiarycare centers. Blood. 2011, Aug 25. [Epubahead of print].A single tertiary treatment center experiencein a four year observation period highlighteddiagnostic discrepancy between referringsites and the tertiary center in 12% of thetotal patients seen at tertiary center, with amajority of discrepant diagnosis in higherrisk MDS. The data identify a need ofconfirmatory diagnosis among patientsreferred to tertiary centers.

TREATMENT:Growth Factors:1. Azzará A et al. High dose (40000 IU

twice/week) alpha recombinant humanerythropoietin as a single agent inlow/intermediate risk myelodysplasticsyndromes: A retrospective investigation on133 patients treated in a single institution.Am J Hematol. 2011;86(9):762–767.

This 10 yr single center observation studyevaluated high dose rh-EPO (40000 IU × 2per week) treatment in low/intermediate 1risk patients demonstrating overall responserates of 75%, 66% and 59% after 8, 16 and24 wks respectively. Pretreatment transfusiondependence and serum EPO levels hadimpact on response to treatment. The meanoverall survival was estimated to be 74 weeks.

2. Balleari E et al. Weekly standard doses of rh-EPO are highly effective for the treatment ofanemic patients with low-intermediate 1risk myelodysplastic syndromes. LeukemiaResearch. 2011, Jul 26 [Epud ahead of print].Higher doses of rh-EPO have been shown toelicit higher response rates, but areexpensive. In the present 5 yr observationstudy with 55 well selected low/intermediate-1 risk MDS patients subjectedto a weekly dose of 40000 IU, the authors

demonstrate significant erythroid response(65.5%) after 3 months of treatment andrecommend 40000 IU as a cost saving option.

IMiDs:1. Fenaux P et al. A randomized phase 3 study

of lenalidomide versus placebo in RBCtransfusion-dependent patients with Low-/Intermediate-1-risk myelodysplastic syndromeswith del5q. Blood. 2011;118(14):3765–76.RBC-transfusion dependent patients withIPSS low-/intermediate-1risk MDS anddel5q31 were treated with 10 mg/day × 21days or 5 mg/day ×28 days of a 28 daycycle of lenalidomide and compared to theplacebo group. Significantly higher rates oftransfusion independence ≥26 wks (primaryendpoint) were noted with 10 and 5 mg oflenalidomide, 56% and 43%, respectively, ascompared to 6% with placebo. RBC-transfusion independence ≥8 wks wasassociated with significant reduction in riskof death and leukemic transformation.

5. Göhring G et al. Telomere shortening, clonalevolution and disease progression inmyelodysplastic syndrome patients with 5qdeletion treated with lenalidomide. Leukemia.2011, Jul 29 [Epub ahead of print].Fourteen transfusion dependent 5q del low/intermediate 1 risk MDS cases receivedlenalidomide. Seven patients had diseaseprogression after a median of 29 months.The patients with progression had shortenedpretreatment telomere length in general andin del5q clones as compared to normaltelomere length in patients withoutprogression. Furthermore, during repeatmeasurements while on lenalidomidetreatment the telomere length appeared toincrease, albeit still shorter than normal or ascompared to those without progression.

6. Sekeres M et al. A phase II study oflenalidomide monotherapy in patients withdeletion 5q acute myeloid leukemia:Southwest Oncology Group Study SO605.Blood. 2011;118(3):523–528.This study included poor prognosispreviously untreated older AML patients withdel 5q, who received induction therapy with50 mg lenalidomide × 28 days and then 10mg daily × 21 days in a 28 day cycle untildisease progression or intolerable toxicity(N=37 evaluable). Fourteen patients completedinduction therapy. Eight continued onmaintenance with CR+PR rate of 14% and amedian relapse free survival of 5 months.Authors conclude that lenalidomide singleagent has only modest activity in these patients.

Educational Resources

7. Möllgård L et al. Clinical effect of increasingdoses of lenalidomide in high-risk myelo-dysplastic syndrome and acute myeloidleukemia with chromosome 5 abnormalities.Haematologica. 2011, 96(7): 963–971.In a prospective phase II multicenter trial,28 poor prognosis patients (16 AML and12 int-2/high-risk MDS) were treated withlenalidomide up to a dose of 30 mg daily× 16 wks. Using IWG criteria, the overallresponse rates were 20% in AML and 36%in MDS. Cytogenetic response was seen in~25% patients. p53 mutations wereassociated with a lack of response.

Demethylating Agents:1. Bordoni RE et al. Hematologic outcomes of

myelodysplastic syndromes treatment withhypomethylating agents in communitypractice. Clin Lymphoma Myeloma Leuk.2011;11(4):350–354.A 3 year retrospective study evaluated theimpact of the length of treatment withdecitabine or azacytidine in high risk MDS. Ina total of 137 patients, mean number oftreatment cycles were 4 for decitabine and 5for azacytidine. The number of cyclesreceived correlated with hematologicresponse in all three lineages.

2. Maurillo L et al. Azacitidine for the treatmentof patients with acute myeloid leukemia:Report of 82 patients enrolled in an Italiancompassionate program. Cancer. 2011, Jul14 [Epub ahead print].This study tested the efficacy of azacitidine,a drug normally used for high-risk MDSpatients, in the treatment of AML(Compassionate program). The overallresponse rate was 32% including CR-12%.The response rate was higher in previouslyuntreated patients as compared to thosewith a history of exposure to chemotherapy(48% vs. 19% respectively).

Other Agents:1. Faderl S et al. A randomized study of 2 dose

levels of intravenous clofarabine in thetreatment of patients with higher-riskmyelodysplastic syndrome. Cancer. 2011,Jul 12 [Epub ahead of print].The differences between the safety andefficacy of low (15 mg/m2 daily × 5 days)and high dose (30 mg/ m2 daily × 5 days ) IVclofarabine administered to high-risk MDSpatients was assessed in fifty-eight patients.Both doses appeared to result in acomparable response rate (Overall ResponseRate 41% vs 29% with 15 and 30 mgrespectively); however, it was also noted thatthe lower dose was significantly less toxic.

19

2. Raza A et al. A phase 2 randomizedmulticenter study of 2 extended dosingschedules of oral ezatiostat in low tointermediate-1 risk myelodysplastic syndrome.Cancer. 2011, Sep 1 [Epub ahead of print].Two extended dosing schedules of oral drug,ezatiostat (Telintra), a glutathione -S transferaseP1-1 inhibitor, were assessed in arandomized ph II study of heavily pretreatedlow to intermediate-1 risk MDS patients(N=89; 60% transfusion dependent). The twodose schedules evaluated were 1500 mg pobid x 2 wks followed by 1 wk off or 1000 mgpo bid ×3 wks followed by 1 wk off. TheHI-E response rate was similar on both arms(~22%) including transfusion independencein 11% baseline transfusion dependentpatients. An effect of the type ofpretreatment was observed with regard toHI-E. Most common adverse events weregrade 1/2 gastro-intestinal effects.

PATHOBIOLOGY:1. Larson RA, Le Beau MM. Prognosis and

therapy when acute promyelocytic leukemiaand other “good risk” acute myeloidleukemias occur as a therapy-relatedmyeloid neoplasm. Mediterranean J Hematoland Infectious Diseases. 2011, Jul 8. [Epubahead of print].Therapy-related AML (t-AML) demonstrateshigher frequency of cytogenetic abnormalitiesas compared to de novo AML. The commontype of t-AML arising 5–7 yrs post alkylatingagent therapy with a preceding MDSdemonstrates loss of or deletions onchromosomes 5 and/or 7. In contrast, theother type of t-AML that arises shortly after(1–3 yrs) exposure to topoisomerase IIinhibitors without an MDS phase oftenshows gene rearrangements similar to APL.The present review focuses on the latter

2. Bejar R et al. Clinical effect of pointmutations in myelodysplastic syndromes.New Eng J Med. 2011;364(26):2496-2506.Current prognostic scoring systems do notincorporate somatic mutations to determinethe clinical phenotype of MDS patients. Thisstudy aimed at identifying somatic mutationsthat may play a role in MDS and foundmutations in 18 genes not reportedpreviously in these disorders. Somaticmutations appear to be common in MDSpatients including in patients with normalcytogenetic reports and may be ofprognostic value, with mutations in 5 specificgenes providing a potentially valuableprognostic signature for overall survival.

3. Cheng CL et al. High bone marrowangiopoietin-1 expression is an independentpoor prognostic factor for survival in patientswith myelodysplastic syndromes. Br JCancer. 2011, Sep 27 [Epub ahead of print].Angiogenic factor expression was exploredin this study with specific focus on theimpact of angiopoietin-1 (Ang-1) geneexpression in bone marrow of patients withMDS (N=208). Compared to normal cohort,Ang-1 expression was higher in MDSpatients. Also, the elevated level of Ang-1expression correlated with increased ratesof leukemic transformation and significantlyshorter overall survival. Thus, Ang-1expression may serve to enhance clinicalprognosis.

4. Hahn CN et al. Heritable GATA2 mutationsassociated with familial myelodysplasticsyndrome and acute myeloid leukemia. NatureGenetics. 2011, Sep 2 [Epub ahead of print].Familial heritable heterozygous missensemutation at c.1061C>T (p.Thr354Met) anda 3 bp deletion c.1063_1065delACA(p.Thr355del) mutation in GATA2transcription factor are reported as likelypredisposing factors for early onset of MDS-AML in a total of four families. Thesechanges affected the second zinc finger ofthe GATA2 protein. Both appear to bedominant loss-of-function mutations affectingGATA2 activity which is critical forhematopoiesis.

5. McGowan KA et al. Reduced ribosomalprotein gene dosage and p53 activation inlow risk myelodysplastic syndrome. Blood.2011 Sep 29.A conditional inactivation of ribosomalprotein S6 gene in mice leads tomanifestation of the features of 5q-syndrome including macrocytic anemia,erythroid hypoplasia and megakaryocyticdysplasia with thrombocytosis. p53 seems toplay a critical role in these manifestations.

We would like to thank Suneel Mundle, amember of the MDS Foundation, for hisassistance in monitoring these importantpeer-review publications on MDS. Wewould also like to thank Anuj Marathe, astudent from the Illinois Math and ScienceAcademy (IMSA), who assisted in thepreparation of the material.

Charitable GivingPlease think of the MDS Foundationin your holiday giving this year.

For individuals and families affected byMDS, it’s more important than ever toraise funds for the Foundation in 2012.

For the past 16 years, the MDSFoundation (MDSF) has provided servicesto patients, their families, and health-care providers working in the field.

With changes in regulations andrestrictions on corporate support, weneed your support more than everthis year to continue producing thesevital programs.

For the first time, MDSF donors candedicate the use of their contributionsto one of the critical services we provide.

■ PATIENT ADVOCACYPatient forums, support groups,information requests, referrals

■ RESEARCHClinical trial assistance, physicianadvisory boards, internationalworking groups on cytogenetics,morphology, diagnostics, quality of life

■ HEALTHCARE PROVIDEREDUCATIONInternational physician and nursingsymposia, interactive/web-basedcontinuing education initiatives,abstracts and manuscripts

Kindly use the enclosed donationenvelope or go to:

www.mds-foundation.org to donate today.

Thank you for your continued support!

20

Last Name ——————————————————————————————— First Name ——————————————————————————————

Title ———————————————— Affiliation/University ————————————————————————————————————————————

Address 1 ——————————————————————————————— Address 2 ———————————————————————————————

City ——————————————————— State ——————————————————————————————— Zip/Postal Code —————————

Country ———————————————————— Phone —————————————————— E-mail ———————————————————————

Type of Practice —————————————————————————————————————————————————————————————————

MDS Foundation Newsletter (The MDS News)

MDS Messenger E-News E-mail Address:

MDS Foundation Diary for Patients

Planned Giving Program: A Guide to Financial Planning

Insurance & Reimbursement Resources for MDS Patients: A Guide to Assistance Programs in the United States (New 2011 Revisions!)

What Does My Bone Marrow Do?

A Caregiver’s Guide

It Takes Time to Realize Your Goals

100 Questions and Answers About Myelodysplastic Syndromes

Understanding MDS: A Patient Handbook

Anemia, Blood Transfusions, Iron Overload, & Myelodysplastic Syndromes (*English only, translated versions coming soon)

PATIENT PUBLICATIONSQTY

MDS Foundation Newsletter (The MDS News)

MDS Foundation E-Newsletter (MDS Essentials) E-mail Address:

Quick Reference Guide — Calculating the IPSS

Consensus on Iron Overload Reference Card

Abstracts of the 10th International Symposium on MDS — May 6–9, 2009, Patras, Greece (Leukemia Research)

Leukemia Research Supplement – Optimizing epigenetic therapies: issues and strategies

Please indicate the quantity you would like to receive of each item. If your order exceeds 2 lbs (.91 kg) then we will contact you to provide a form of payment for the shipping costs. There is no charge for our publications.

PLEASE RETURN THIS FORM TO: The MDS Foundation, Inc, 4573 South Broad Street, Suite 150, Yardville, NJ 08620 United StatesUSA: 1-800-MDS-0839, Outside US: 609-298-1035; Fax: 609-298-0590 Email: jbutchko@mds-foundation.org, www.mds-foundation.org

MDS Awareness Pin – $3.99 each Subcutaneous Chemotherapy – Practical guidelines for clinical practice (DVD)

QTY VIDEO PROGRAMS

Available online only at http://www.mdsresourcecenter.orgMDS Awareness Program, Segment 1: The Past & Present in MDSMDS Awareness Program, Segment 2: Clinical Presentation, Diagnosis, and Pathology

MDS Awareness Program, Segment 3: Ineffective Hematopoiesis: Considerations in Diagnosis & TreatmentFormat: ❏ CD or ❏ Booklet Languages: ❏ English ❏ French ❏ German ❏ Italian ❏ Japanese ❏ Spanish

MDS Awareness Program, Segment 4: Survival, QoL, and Treatment OptionsFormat: ❏ CD or ❏ Booklet Languages: ❏ English ❏ French ❏ German ❏ Italian ❏ Japanese ❏ Spanish

CME PROGRAMSQTY

Languages: ❏ English ❏ Arabic ❏ Czech ❏ German ❏ Greek ❏ Hebrew ❏ Hungarian ❏ Italian ❏ Japanese ❏ Polish ❏ Portuguese ❏ Romanian ❏ Russian ❏ Spanish ❏ Turkish

DONATIONS

PROFESSIONAL PUBLICATIONSQTY

EHA 2009: Therapeutic Decision Making in the Treatment of MDS: Challenging the Experts

ONS 2009: Practical Therapeutic Options & Approaches: Keeping MDS Patients on Track (Case-Based)

QTY Non-CME CD-ROM PROGRAMS

MDS Educational Resources Order Form

21

Contributions to the MDS Foundation

Thank You!Donna Johnson, Lindenhurst, NY

Carol Holman, San Diego, CA

Armando R. Ruiz, Huntington Beach, CA

Sheila Martin, Fairfax, VA

Nikki StylesLaunceston, Tasmania, Australia

Joni Hogue, Cibolo, TX

Michael J. Maher, Summit, NJ

Robert C. Donoho, Wheaton, IL

Kevin P. Rynn, Marlton, NJ

Harold and Florence RyderMechanicsburg, PA

Margaret L. Foor, Everett, PA

Victor Pagone, Castro Valley, CA

Gene Blalock, Orlando, FL

Herbert I. Vine, East Brunswick, NJ

Henry M. Blume, Jr., Menlo Park, CA

Joy Turner, Snellville, GA

Leo F. Lynn, San Diego, CA

Arthur G. Lipman, Northbrook, IL

Carol Reinarts, Fort Walton Beach, FL

Angelo and Rose Staikos, Hazlet, NJ

Marlene Strohl, San Marcos, CA

William Fletcher, Bahama, NC

Joe Artuso, Berwyn, PA

Howard Stephenson, Lakeside, MI

Arlene Johnson, Novi, MI

Barry F. Johnson, Dallas, TX

Joanne Adleberg, Baltimore, MD

Ronald Lapp, Paso Robles, CA

Michiko Morrell, Rowland Heights, CA

William Howenstein, Grosse Pointe, MI

R. George Angulo, Sun Lakes, AZ

Jacobs Ladder CongregationMaple Glen, PA

Robert M. Wester, Destin, FL

Aldeane Soot, Lake Oswego, OR

Melvin Ringel, Baltimore, MD

Clement and Joan RancourtPlantsville, CT

Delos R. Goddard, Colorado Springs, CO

Roberto Degl Innocenti, Miami, FL

Stan Trail, Dekalb, IL

Barbara B. Young, Waxahackie, TX

Thomas Pearce, Birmingham, AL

Craig Scruggs, Jackson, AL

Lois Smith, Clanton, AL

William Shulevitz, New York, NY

Robert Skirboll, Greensboro, NC

Debra Samuelson, New York, NY

Margaret B. Reeder, Hobe Sound, FL

Norma A. Sheridan-Leos, Pearland, TX

Raymond and Prudence MallesWarminster, PA

Len Yool, Los Altos, CA

Sarah F. Katis Flynn, Madison, AL

Mohammad Zahir, MD, Roslyn, NY

Matthew J. Warshauer, Sarasota, FL

Patricia A. Rhoten, Bridgewater, NJ

Lucille B. Nase, Centerville, SD

Matthew J. Keller, Jr., Chicago, IL

Eunice Edgington, Rohnert Park, CA

Violet Walker, Maryville, TN

Diana Mick, Signal Mtn, TN

Alfred and Dorothy Harding, Medford, NJ

Steve Redpath, Lyndhurst, OH

Robert Baxter, Worthing, West Sussex, UK

Gifts to the FoundationThe MDS Foundation relies entirely on gifts and membership fees to further its work. We

would like to acknowledge the generosity of the following individuals and organizations thathave recently provided gifts to the Foundation:

Murray Diamond, Montreal, Quebec, Canada

Ruth Lublin, Bryn Mawr, PA

Johnny Ramos, Queens Village, NY

Karen Dewberry, Freeport, NY

Sarita Coopwood, Madison, AL

Barbara Seidenberg, White Plains, NY

F. David Rausch, Newberg, IN

Daniel Goldstein, Cherry Hill, NJ

Joseph Costa, Sleepy Hollow, NY

Thomas Brennan, Annandale, VA

Joseph and Sally Costa, Nyack, NY

Sherry Lee Berkowitz, Fresh Meadows, NY

Maurice Hollar, Wichita, KS

Leonard Bini, Fallbrook, CA

Helen M. Havens, Napa, CA

Milford & Zita Desenberg, Sarasota, FL

Darryl H. Hilton, College Park, GA

Mary B. Gregory, Webster Springs, WV

Giuseppe Mallimo, Cypress, TX

Arthur Berkowitz, Lake Worth, FL

Richard C. Donovan, Morrisville, PA

Melvin Fuerst, DDS, Philadelphia, PA

Stuart and Caryn Miller, Great Neck, NY

Joyce Gollhofer, Golden, CO

George Goldman, Rockford, IL

Margaret Blankenship, Oroville, CA

Jay and Patty Gregor, Pewaukee, WI

Nathan Cedars, Stephenville, TX

Pius Gross, Buckeye, AZ

James B. Harris, Barrie, Ontario, Canada

Rebecca Demori, Central

Terry Green, Holmes Beach, FL

Carol Full, Springfield, MA

Rocco & Marylou Lapenta, West Nyack, NYMarilyn Litvin, Framingham, MA

Carol Elder, Bridgeville, PA

Richard & Marilyn Dickstein, Floral Park, NYHarriet Brenner, Greenville, SC

Tom Chalfant, Westlake, OH

M.M. Hansen, Northglenn, CO

Mark Lasher, Boca Raton, FL

Rochelle Axelrod, Aventura, FL

Janet Bender, Phoenix, AZ

22

TitleXxxx

A SpecialThank You to

We would like to especially thankGabrielle’s Angel Foundation

for Cancer Researchfor their generous grant in the

amount of $25,000.00 in supportof young investigators through

the MDS Foundation.

A Living EndowmentMany families are affected by living with the reality of MDS. There is an extraordinary

way to contribute to the MDS Foundation and support our mission of working as aresource for patients, families, and healthcare professionals.

A commitment to donate to the Foundation on occasions of loss, birthdays, andanniversary remembrances can be made. Honor your friends or family memberson these occasions with a donation, and the MDS Foundation will send anacknowledgment to the recipient, recognizing the occasion.

A Living Endowment donationhas been made in honor of:Susana Esther Ormaechea

This donation was submitted by:Hanna Pintozzi, Acworth, GA

A Living Endowment donationhas been made in honor of:

Victor Nesterovskij

This donation was submitted by:Ludmilla Lesney, Sunny Isles Beach, FL

A Living Endowment donationhas been made in honor of:

Rich Graul

This donation was submitted by:G2 Inc., Annapolis Junction, MD

A Living Endowment donationhas been made in honor of:William and Patricia Donlin

This donation was submitted by:Colleen Donlin-Smith, Penfield, NY

A Living Endowment donationhas been made in honor of:

Cousin living with MDS

This donation was submitted by:Kelly Sereno

A Living Endowment donationhas been made in honor of:Cantor Josh Koningsberg

This donation was submitted by:Robert and Ruth Lesser

Woodbridge, CT

A Living Endowment donationhas been made in honor of:

Luca and StephanieFactor-Lambertini

This donation was submitted by:Stephanie Factor, New York, NY

A Living Endowment donationhas been made in honor of:

Cathern Allen

This donation was submitted by:Philip S. Allen, Port Huenerne, CA

A Living Endowment donationhas been made in honor of:

Don Campbell and Linda Winters

This donation was submitted by:Marilyn W. Trapp, Columbus, OH

A Living Endowment donationhas been made in honor of:

Delph Gustitus’ Mother

This donation was submitted by:Geoff and Sandy Goldworm, Jupiter, FL

A Living Endowment donationhas been made in honor of:

Janet Aarnio

This donation was submitted by:Chris and Tara Killgore, Gresham, OR

A Living Endowment donationhas been made in honor of:

Robert DuFore

This donation was submitted by:Valerie Dubois, Moss Beach, CA

Ronald E. Jerro, Great Falls, VA

Gordon P. Wilson, Richmond, VA

James F. Montgomery, Atlanta, GA

John Crazier, Irvine, CA

Eric Plant, Pompton Plains, NJ

Kathryn Dixson, Atlanta, GA

Justin Vernon, Salem, MA

Leroy & Alvina Schumacher, Columbus, NE

Nora Ephron and Nicholas Pileggi FDNNew York, NY

Judy L. Wagaman, Kulztown, PA

Lawrence M. SaugerSterling Heights, MI

John J. Kennedy, Horseheads, NY

Susan J. Ferber, New York, NY

Lorraine B. Gleixner, Greenwood, IN

H. Charles Ryder, Mechanicsburg, PA

Alvin & Rosa Hudgins, University Park, FL

Theresa Johnson, Leonardtown, MD

Estate of Edward FleischmanPrescott, AZ

Estate of Laura SullivanBloomington, IL

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In Memoriam

Pamela Gurstein, Sherman Oaks, CA

A memorial fund has been established in the name of

Ms. Barbara AllenDonations have been made in Ms. Allen’s memory by:

Vincent and Ida Lepore, North Salem, NY

A memorial fund has been established in the name of

Mrs. Jean AvolaDonations have been made in Mrs. Avola’s memory by:

USIT EDW Team, Chantilly, VA

A memorial fund has been established in the name of

Mr. Denvel Ball, Sr.Donations have been made in Mr. Ball’s memory by:

Brian H. Miller, D.D.S.Newton Centre, VA

A memorial fund has been established in the name of

Dr. David BeckerDonations have been made in Dr. Becker’s memory by:

Karl and Ruth Hess & Family, West Nyack, NY

A memorial fund has been established in the name of

Mr. David BiolosDonations have been made in Mr. Biolos’ memory by:

Chris Bohannon, Princeton, TX

A memorial fund has been established in the name of

Ms. Amanda BohannonDonations have been made in Ms. Bohannon’s memory by:

Sheri, Alan, Brett & Brian Rothstein

A memorial fund has been established in the name of

Mr. Melvin BrazmanDonations have been made in Mr. Brazman’s memory by:

Ruth Jatkoff & "Kappy" Kaplan, Boynton Beach, FL

A memorial fund has been established in the name of

Mr. William CharnowDonations have been made in Mr. Charnow’s memory by:

Claire-Elizabeth Sloan, Portland, OR

A memorial fund has been established in the name of

Mr. Clem CahallDonations have been made in Mr. Cahall’s memory by:

Donald and Marilyn Mehr, Dana Point, CA

A memorial fund has been established in the name of

Ms. Carolyn Clayton-PestorDonations have been made in Ms. Pestor’s memory by:

Maria Morales-Masinsin, Jersey City, NJ

A memorial fund has been established in the name of

Mr. Nicholas CocinoDonations have been made in Mr. Cocino’s memory by:

Haley & Aldrich, Inc., Manchester, NH

A memorial fund has been established in the name of

Ms. Mary CostiganDonations have been made in Ms. Costigan’s memory by:

Janet Cherkasky, Rochester, NY

A memorial fund has been established in the name of

Mr. Gilbert CresovDonations have been made in Mr. Cresov’s memory by:

Charles Foster, Parlin, NJ

A memorial fund has been established in the name of

Ms. Irene CristianoDonations have been made in Ms. Cristiano’s memory by:

Roberto degl’Innocenti, Miami, FL

A memorial fund has been established in the name of

Mr. Alessandro degl’InnocentiDonations have been made in Mr. degl’Innocenti’s memory by:

Sherry Lee BerkowitzFresh Meadows, NY

A memorial fund has been established in the name of

Mrs. Tabietha BerkowitzDonations have been made in Mrs. Berkowitz’ memory by:

Barbara NoskaFlourtown, PA

Carole Shaffer and Frank CannWarrington, PA

Dr. Spencer SolodarAbington, PA

A memorial fund has been established in the name of

Mrs. Barbee BaronDonations have been made in Mrs. Baron’s memory by:

Alex & Lorraine KarpovitchWarrington, PA

Tom and Margaret WallsWarminster, PA

Walter & Theresa JohnsonSchnecksville, PA

Glenn and Diane Kasten, Center Valley, PA

Dave and Jo Anne PolishWarrington, PA

Margaret K. DeskaWarminster, PA

Joe and Regina SillittiSicklerville, NJ

A memorial fund has been established in the name of

Mr. Walter BinasiewiczDonations have been made in Mr. Binasiewicz’ memory by:

Cargill Texturizing SolutionsWayzata, MN

Sharon Kusne, Phoenix, AZ

Daniel G. KlineChandler, AZ

Jose and MariaArtaechevarria Center, CO

Donald and Ladeane CaseyParadise Valley, AZ

Steve and Debbie TidlerParker, CO

Michael and Tina SweeneyRocklin, CA

Donna ChamberlainFoxfield, CO

Joe and Lee ShireyParker, CO

Charles and Denise BouleyParker, CO

Golden Baldock,James & Paula KelloggMaricopa, AZ

Lisa Davis, Troy, OH

Tom and Teresa McHenryParker, CO

Betty Jo DaughertyMaricopa, AZ

A memorial fund has been established in the name of

Mr. Philip BlairDonations have been made in Mr. Blair’s memory by:

Brown GardeniasJohnson City, TN

Bob and Joni DavisJohnson City, TN

Joseph and Sarah MorganJonesborough, TN

Class of 1944Perth Amboy High SchoolPerth Amboy, NJ

City of Johnson City, TNJohnson City, TN

A memorial fund has been established in the name of

Ms. Peggy Joyce Shoun CannonDonations have been made in Ms. Cannon’s memory by:

Karen C. HansonHudson, IA

Marius P. ChristensenCedar Falls, IA

A memorial fund has been established in the name of

Ms. Pauline E. ChristensenDonations have been made in Ms.Christensen’s memory by:

Norma W. BrodskyAlexandria, VA

Kinloch Yane FamilyAlbuquerque, NM

Jeffrey Lacquement and Diane LoomisDamascus, MD

John RollinsAlexandria, VA

Elizabeth GodoyChantilly, VA

ACE Sunshine CommitteeSpringfield, VA

A memorial fund has been established in the name of

Mr. Robert Lawrence CloverDonations have been made in Mr. Clover’s memory by:

Philip and Bonnie SandersKings Mountain, NC

Jo Collins, Williamsburg, MI

Jerrold and Anna PostleDublin, OH

A memorial fund has been established in the name of

Ms. Dorthy DeckardDonations have been made in Ms. Deckard’s memory by:

Stephan Perry, Morro Bay, CA

Annette, Erick, Chris, Brenda, Sergio, Jennifer, Emily,and Tami Dominguez, Escondido, CA

A memorial fund has been established in the name of

Ms. Virginia BastDonations have been made in Ms. Bast’s memory by:

Karen TischCrystal Lake, IL

Darryl and Janice SmithMarblehead, MA

Dennis and Nancy RaederElkhart, WI

Pete FrenclCrystal Lake, IL

Mr. and Mrs. David A. Bergand MatthewBristol, WI

John & Madaline WalleriusSan Diego, CA

Michael & Maureen ParlbergCrystal Lake, IL

Dennis & Sharon FlanaganBelvidere, IL

Gisela A. BerlethWoodstock, IL

Jim and Jane RagerElgin, IL

Anne Wallerius Hoy,Sandra Wallerius Goulet,Carin SoderlundCamden, ME

North Elementary School in Crystal LakeCrystal Lake, IL

Woods Creek ElementarySchool Social CommitteeCrystal Lake, IL

A memorial fund has been established in the name of

Mr. John I. BensonDonations have been made in Mr. Benson’s memory by:

Marlys JohnsonBettendorf, IA

Jack and Nancy FrenchBettendorf, IA

Dean and Joey ArneyBettendorf, IA

Doris MelchertBettendorf, IA

A memorial fund has been established in the name of

Mr. Bobby J. DoverDonations have been made in Mr. Dover’s memory by:

24

Gilda WeberVirginia Beach, VA

From FriendsMonroe Township, NJ

Stanley BeecoffBoynton Beach, FL

Howard and Gail LipschultzLincolnshire, IL

Phil and Gail SudbergNew Hyde Park, NY

Jack and Fay TepperBoynton Beach, FL

Al and Bernice RosenMonroe Township, NJ

Harold & Bernice ReismanOakland Gardens, NY

A memorial fund has been established in the name of

Mr. David GreenDonations have been made in Mr. Green’s memory by:

Mickie and Sy RubinMonroe Township, NJ

Vic and Lee BlumenthalMashpee, MA

Yale andBobbie HirshbergWebster, MA

Audrey SussmanVictor, NY

Michael and Harriet GereNorwich, CT

Linda’s Golf FriendsHackensack, NJ

Leonard LentzSarasota, FL

Marsha J. ShindelmanMonroe Township, NJ

Susan ObsatzMonroe Township, NJ

John and Diane MarxSeal Beach, CA

Terrance and MarionMcLaugjhlinLa Palma, CA

Rich and Ann BlashfordLa Palma, CA

Jim and Connie MarxLa Palma, CA

Deck & Barrington FamilyBuena Park, CA

Rich and Gaby SulpizioLa Jolla, CA

JB and Shannon GohrCosta Mesa, CA

Carol Joy GugertNewnan, GA

Dale Junior HighAnaheim, CA

A memorial fund has been established in the name of

Mr. Henry (Hank) GugertDonations have been made in Mr. Gugert’s memory by:

Mr. & Mrs. AdamsLakeland, FL

Jimmy ChapmanVicksburg, MI

Jerry and Arlene ClawsenLake Wales, FL

Fred and Bobbi SadlerLake Wales, FL

Gilbert and Gwen ChildersLake Wales, FL

Joe and Charlotte HannaLake Wales, FL

Carol HainesLake Wales, FL

Douglas and Norma Jean WalstadLake Wales, FL

Wayne and Carol WhitakerLake Wales, FL

Carl Mihalyfi, Oxford, MI

A memorial fund has been established in the name of

Mr. Ernest T. KazenskyDonations have been made in Mr. Kazensky’s memory by:

Alan Cosenza PhilipGuilford, CT

Wieloch KathrynGuilford, CT

Green McCreightGuilford, CT

Nancy E. NussbaumGuilford, CT

Anne MelilloEast Haven, CT

Barbara GreenspanMadison, CT

Joseph and Christine BarbarottaBranford, CT

Robert and Mamie RomanoOrange, CT

Ivan and Margarita LansbergGuilford, CT

Kathryn Greene McCreightNew Haven, CT

Alan R. CosenzaMilford, CT

Philip T. WielochClinton, CT

Tom TrombettaSanta Clara, CA

Maureen Comenzo MassaChester, CT

Linda D. ClarkGuilford, CT

R.J. Julia Booksellers, LLCMadison, CT

Tracey BlairSan Jose, CA

Al and Annette SpinaBoyton Beach, FL

Carol AlbigBranford, CT

Elena LingMiddletown, CT

Andi FishmanLas Vegas, NV

Douglas and Mary SnyderHamden, CT

Jacie L. EvansTomball, TX

Vernette E. GodfreyCapitola, CA

Richard & Barbara GasperOwings Mills, MD

Susie PattonClute, TX

Audrey HassanHowell, NJ

A memorial fund has been established in the name of

Mrs. Ann Leslie Cosenza HallbergDonations have been made in Mrs. Hallberg’s memory by:

Fay J. Wanetick, Pittsburgh, PA

A memorial fund has been established in the name of

Mr. Edward FleischmanDonations have been made in Mr. Fleischman’s memory by:

Kevin Shields, Hoboken, NJ

A memorial fund has been established in the name of

Mr. Constantin IovanDonations have been made in Mr. Iovan’s memory by:

Charlie and Cathy Skala, Boulder, CO

A memorial fund has been established in the name of

Mr. Karsten JoehnkDonations have been made in Mr. Joehnk’s memory by:

Tony & Bernadette De Simone, Cedar Grove, NJ

A memorial fund has been established in the name of

Mr. Eric JohnsonDonations have been made in Mr. Johnson’s memory by:

Joe and Tori McCleese, Bucyrus, OH

A memorial fund has been established in the name of

Mr. Warren D. JohnsonDonations have been made in Mr. Johnson’s memory by:

Philip and Lynn HrenakMayville, WI

Richard and Mary AndrewsMuskego, WI

A memorial fund has been established in the name of

Mr. Edward HrenakDonations have been made in Mr. Hrenak’s memory by:

Sarah F. Katis Flynn, Madison, AL

A memorial fund has been established in the name of

Mr. William M. FlynnDonations have been made in Mr. Flynn’s memory by:

Ekaterini Fokas, Astoria, NY

A memorial fund has been established in the name of

Mr. Andreas FokasDonations have been made in Mr. Fokas’ memory by:

Bill and Betty HoustonBettendorf, IA

Max & Maggie RensbergerMoline, IL

Barb ThedeBettendorf, IA

Mike and Chris BeuthinBettendorf, IA

Harlan and Bernice MeierDavenport, IA

Jerry and Linda RogersBettendorf, IA

Craig and Jan WindmillerBettendorf, IA

Steven and Marilyn PieartBettendorf, IA

Tim and Peggy TebockhorstDavenport, IA

Jonathan & Colleen GrekoLoline, IL

Jeff and Janet MelchertBettendorf, IA

John and Linda GreenleeDavenport, IA

Ken and Linda JonesBettendorf, IA

Karen AcostaHampton, IL

Charles & Donna KuykendallBettendorf, IA

Bettie BarssBettendorf, IA

Mark and Deb McManusBettendorf, IA

Costas & Yvonne ConstantinouDavenport, IA

Robert and Digna PimentelBettendorf, IA

Gene and Ruth RettenmaierDavenport, IA

Pat and Cathleen HarrisEagan, MN

Jerry and Mari Jo PittsBellevue, IA

Jim and Mary Jo GothardWalnut Creek, IL

Mike and Pam McCarthyEast Dubuque, IL

Jim and Pat TheisenDubuque, IA

Doug GothardLong Grove, IA

Steve and Laurie GothardDaytona Beach, FL

Marge GothardBellevue, IA

Brent Rathje and Linda HansonMaquoketa, IA

Mark and Sue McCluskeyBettendorf, IA

Ellen JorgensenDavenport, IA

Rosie FetterMoline, IL

East Elementary Social CommitteeLittleton, CO

Bob and Kay BashamBettendorf, IA

Barry, Diane, Collin, Holly,Maddox & Addison PackerDallas, TX

David and Angela TaylorPflugerville, TX

Rob and Tina ShoemakerSpring, TX

A memorial fund has been established in the name of

Mrs. Sydney KennedyDonations have been made in Mrs. Kennedy’s memory by:

Ron and Linda DunnAlbany, NY

James & Harriet Jo LinebergerNew Canaan, CT

Rick, Patty, Brandon, Kevin and Bryan AlexanderDavid and Rory Jones, New Canaan, CT

Jerry I. SpeyerNew York, NY

Ron and Kathy AssafBoca Raton, FL

A memorial fund has been established in the name of

Mr. Arnold KrollDonations have been made in Mr. Kroll’s memory by:

Allen StarrettCharlotte, NC

Phyllis, Rocky and Brandon Rodriguez, Fort Lauderdale, FL

Elissa LorantShelton, CT

A memorial fund has been established in the name of

Mr. Roy Samuel KussnerDonations have been made in Mr. Kussner’s memory by:

Jeremy L. Krock, DO, FAOCA, Peoria, IL

A memorial fund has been established in the name of

Mrs. Margaret Elizabeth KrockDonations have been made in Mrs. Krock’s memory by:

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Christie ComunaleIslip, NY

Ron and Peg LaroccaFallbrook, CA

Bruce & Maureen MathewsHuntington, NY

Elizabeth RomeroBay Shore, NY

Ron and Rose Ann MinersNorthport, NY

The Cappelli FamilyGarden City, NY

Richard A. MarchantSmithtown, NY

James N. AntonacciSyracuse, NY

The Huntington RetiredTeacher’s AssociationNo. Granville, NY

James and Joan PhillipsMelville, NY

Alan and Marilyn ZaretskySouthampton, NY

Tony and Erika StellatoRockaway Township, NJ

Janet BarberaHuntington, NY

Joan A. GriffinHuntington Station, NY

A memorial fund has been established in the name of

Mr. Ralph LewisDonations have been made in Mr. Lewis’ memory by:

ODAR EmployeesKnoxville, TN

Kevin RoswellFairview, TN

A memorial fund has been established in the name of

Ms. Louise MoffettDonations have been made in Ms. Moffett’s memory by:

Edward & Camilla MagnoliMonte Rio, CA

Leslie PiperSan Rafael, CA

A memorial fund has been established in the name of

Mr. Ken Monnens, Sr.Donations have been made in Mr. Monnens’ memory by:

Lou and Corinne BlonsteinWest Palm Beach, FL

Barbara Plumser, Delray Beach, FL

Robert and Robin LiebhaberCoral Springs, FL

A memorial fund has been established in the name of

Mr. Irwin Rusty MuntnerDonations have been made in Mr. Muntner’s memory by:

Philip and Sara KinzerMcCormick, SC

Shirley Giroir, Rosaland Sloan& Joy Dupe, Morgan City, LA

Richard and Karen TorreyMcCormick, SC

William and Kathryn EssexMcCormick, SC

A memorial fund has been established in the name of

Mr. Henry S. MuraDonations have been made in Mr. Mura’s memory by:

Lorraine Hayleck, Dayton, MD

Julie Ann Lee, Menlo Park, CA

Cindy Lewis, Mitchellville, MD

Shek Keung & Wannie WongSan Francisco, CA

A memorial fund has been established in the name of

Mr. Jeu S. MingDonations have been made in Mr. Ming’s memory by:

Jo VanderbeckClifton, NJ

Richard and Nellie SamseMahwah, NJ

A memorial fund has been established in the name of

Mr. George MitchellDonations have been made in Mr. Mitchell’s memory by:

Tom and Carol SiebePetaluma, CA

Phil Garzoli, Petaluma, CA

Team Ghilotti, Inc.Petaluma, CA

Mickey and Elaine RebecchiWatsonville, CA

Joanne ThomasSanta Rosa, CA

Elmo and Dina MaggioraSausalito, CA

Bill Allen, Petaluma, CA

The Tingstrom FamilyPetaluma, CA

Ross and Laurie LeaskPetaluma, CA

William and Patricia WrightNovato, CA

Christine LehmannCoon Rapids, MN

Martha Olson, Sonora, CA

Macphail Properties, Inc.San Rafael, CA

Lonni Crispen, Lincoln, CA

CSW/Stuber-StroehEngineering Group, Inc.Novato, CA

Douglas AllardSanta Rosa, CA

Mike and Jeanne WilliamsLafayette, CA

Jim and Anne SchroederPetaluma, CA

Benita Morris, Fresno, CA

Eckhoff Accountancy Corp.San Rafael, CA

Bette QuaresmaPetaluma, CA

Lois G. SkarstenPetaluma, CA

Dan and Casey ArenaPetaluma, CA

A memorial fund has been established in the name of

Mr. Theodore Joseph LehmannDonations have been made in Mr. Lehmann’s memory by:

Norman and Ann Craig, Oberlin, OH

A memorial fund has been established in the name of

Dr. Grace Yu-Sheng LoDonations have been made in Dr. Lo’s memory by:

Carol L. Schroeder & Family, Riverside, CA

A memorial fund has been established in the name of

Mrs. Gretchen P. LudmanyiDonations have been made in Mrs. Ludmanyi’s memory by:

Lucille B. Nase, Centerville, SD

A memorial fund has been established in the name of

Mr. Albert NaseDonations have been made in Mr. Albert Nase’s memory by:

C.M. Monti, Ocala, FL

A memorial fund has been established in the name of

Ms. Elaine J. NoelDonations have been made in Ms. Noel’s memory by:

James J. O’Donnell, III, Ocean City, NJ

A memorial fund has been established in the name of

Mrs. Arlene O’DonnellDonations have been made in Mrs. O’Donnell’s memory by:

Angelo and Rose Staikos, Hazlet, NJ

A memorial fund has been established in the name of

Ms. Rose PallittoDonations have been made in Ms. Pallitto’s memory by:

Gregory Pappas, Plymouth, MI

A memorial fund has been established in the name of

Mr. John PappasDonations have been made in Mr. Pappas’ memory by:

Knights of Columbus, Newbury Park, CA

A memorial fund has been established in the name of

Mr. James MasonDonations have been made in Mr. Mason’s memory by:

Paul and Ann Fisher, Corpus Christi, TX

A memorial fund has been established in the name of

Mr. Ben Rudd Medford, Jr.Donations have been made in Mr. Medford’s memory by:

Geraldine Sullivan-Keck, Setauket, NY

A memorial fund has been established in the name of

Mr. Frank MilewskiDonations have been made in Mr. Milewski’s memory by:

Neonatal Practitioners, Charlotte, NC

A memorial fund has been established in the name of

Mr. Michael MillerDonations have been made in Mr. Miller’s memory by:

Greg and Stefanie Woods, Cicero, NY

A memorial fund has been established in the name of

Mrs. Susan LachutDonations have been made in Mrs. Lachut’s memory by:

Ernie and Diana Breitung, Jacksonville, FL

A memorial fund has been established in the name of

Ms. Joan C. LawlorDonations have been made in Ms. Lawlor’s memory by:

Staff and Friends at Behavioral Health Partners, Frederick, MD

A memorial fund has been established in the name of

Mr. James LawrenceDonations have been made in Mr. Lawrence’s memory by:

Lois E. MaasSidney, NE

Ruth A. CanfieldThousand Oaks, CA

A memorial fund has been established in the name of

Mr. Martin H. ParkDonations have been made in Mr. Park’s memory by:

Gary and Ann NorlanderDunedin, FL

Michael Emmons, Sarasota, FL

Turner TelecoAlexandria, VA

Karen MagenheimerPalm Harbor, FL

Tom and Sue FinnChicopee, MA

A memorial fund has been established in the name of

Mr. Nelson B. Piper, Jr.Donations have been made in Mr. Piper’s memory by:

Frederick and Joyce KirlinShillington, PA

Roberta W. BorrelWyomissing, PA

Beverly A. GraeffShillington, PA

Patricia A. OwensWest Lawn, PA

Sheryl Baver, Fleetwood, PA

Dennis Trupe, Reading, PA

John HoroshockReading, PA

Barbara A. Clark and David H. MelcheReading, PA

Dorothy M. BeavensWernersville, PA

Robert and Beryl FrederickSinking Spring, PA

Mr. and Mrs. Carlyle ZaunAdamstown, PA

Marian J. KreitzSinking Spring, PA

Karen Bare, Shillington, PA

Barry and Lyne BrobstFogelsville, PA

Richard and Janet SillhartSinking Springs, PA

Clarence and Bettie TrupeShillington, PA

A memorial fund has been established in the name of

Mr. Gene A. RaderDonations have been made in Mr. Rader’s memory by:

Shilpa Ramaswamy, Naperville, IL

A memorial fund has been established in the name of

Mr. Lakshminarayan RamaswamyDonations have been made in Mr. Ramaswamy’s memory by:

26

Dale and Patty Jo O’NealCarrollton, KY

Beverly DailyColleyville, TX

James & Mary B. MosgroveCarrollton, KY

Don and Millie StethenBedford, KY

Danny and Glenda AxlerCarrollton, KY

Sam and Sue ScottCarrollton, KY

A memorial fund has been established in the name of

Mrs. Marlene SchirmerDonations have been made in Mrs. Schirmer’s memory by:

Richard and Vera WollaverLakeville, PA

Nora Koch, Cherry Hill, NJ

Teri and Kathy Smith-JonesRehoboth Beach

The Jasner Family, Media, PA

Elizabeth CorritoreWallingford, PA

Dennis and Marilyn CzekajHollandd, PA

Erica Spence-UmsteadYardley, PA

Marina Roder, Astoria, OR

Scott and Marta McGovernMarlton, NJ

Office of the General CounselPhiladelphia, PA

Aileen Roder, Washington, DC

Siobhan Roder-Cox, Parker, CO

Alan & Susan RosenbaumDelran, NJ

Thomas Roder, Morrisville, PA

Robert & Loretta WonderlinDelran, NJ

A memorial fund has been established in the name of

Mr. Mark J. RoderDonations have been made in Mr. Roder’s memory by:

Livingston Lions Club, Top Club 62–Yosemite Regional 63Livingston, CA

A memorial fund has been established in the name of

Mr. Willie RolandDonations have been made in Mr. Roland’s memory by:

Christine GasserLittle Neck, NY

A memorial fund has been established in the name of

Mr. Donald SchulzeDonations have been made in Mr. Schulze’s memory by:

Norman Schwab, Los Angeles, CA

A memorial fund has been established in the name of

Mrs. Arlene SchwabDonations have been made in Mrs. Schwab’s memory by:

Bhakti Soneji, Fremont, CA

A memorial fund has been established in the name of

Ms. Gretchen StreetDonations have been made in Ms. Street’s memory by:

Richard ScibelliManalapan, NJ

A memorial fund has been established in the name of

Ms. Jeanette ScibelliDonations have been made in Ms. Scibelli’s memory by:

Barbara SeidenbergWhite Plains, NY

A memorial fund has been established in the name of

Mr. Paul SeidenbergDonations have been made in Mr. Seidenberg’s memory by:

Hedy Waltman, Honesdale, PA

A memorial fund has been established in the name of

Mr. Donald A. SmithDonations have been made in Mr. Smith’s memory by:

Friends at CNO Corporate Security, Carmel, IN

A memorial fund has been established in the name of

Mrs. Sandra K. SmithDonations have been made in Mrs. Smith’s memory by:

Gertrude P. Schneider, Wayne, NJ

A memorial fund has been established in the name of

Mr. William SchneiderDonations have been made in Mr. Schneider’s memory by:

Caroline ReillyNew Rochelle, NY

Anna Fusilli, Linden, NJ

Frank and Pat CarrollLevittown, PA

A memorial fund has been established in the name of

Mr. Charles SayerDonations have been made in Mr. Sayer’s memory by:

Sonja M. Lamppa, Superior, WI

A memorial fund has been established in the name of

Mr. Ralph H. RossDonations have been made in Mr. Ross’ memory by:

Laura Scott, Harrington Park, NJ

A memorial fund has been established in the name of

Mr. Antony RubinoDonations have been made in Mr. Rubino’s memory by:

David S. Carroll, New York, NY

A memorial fund has been established in the name of

Mr. Robert SanthayDonations have been made in Mr. Santhay’s memory by:

Rita Santiago, Bronx, NY

A memorial fund has been established in the name of

Mr. Carlos M. SantiagoDonations have been made in Mr. Santiago’s memory by:

Ronald DavenportMcLoud, OK

Tammy MitchellFort Worth, TX

A memorial fund has been established in the name of

Mr. Breck RykerDonations have been made in Mr. Ryker’s memory by:

Gail C. McGlothinTyler, TX

Ronnie and Susan CarmanTroup, TX

Lori, Karl and Trinity VogelAustin, TX

Rosie Coble, Round Rock, TX

Jerald and Carol BrinkkoeterBuda, TX

Allan and Nancy AndersonAransas Pass, TX

Marc and Jane MurphyNorman, OK

McSwain, Foster & FamilyCoos Bay, OR

Bob and Demetra PenderCedar Park, TX

Linda RoperOlton, TX

A memorial fund has been established in the name of

Mrs. Reta Joyce ShugartDonations have been made in Mrs. Shugart’s memory by:

Arlene MilesDenver, CO

David JohnsSalida, CO

Alex and DianaHammersteinDenver, CO

Petronella CaycedoAurora, CO

Bill and Ann CaffreyEnglewood, CO

Nancy McCallinParker, CO

Julia RamseyDenver, CO

Lee ReichertDenver, CO

Pete, Regina, Chris and Eryca PetersCentennial, CO

Dick and Eddy DuckelsCentennial, CO

Jennifer LarsenLakewood, CO

Ellen GolombekDenver, CO

Drew and Ona FosterDallas, TX

The Tipton FamilySalt Lake City, UT

VPFA Team MembersFront Range Community CollegeDenver, CO

Dick and Marge CoatesDenver, CO

Helga DoucetteDenver, CO

Kevn and Sheree CoatesHenderson, CO

Sheila BugdanowitzDenver, CO

A memorial fund has been established in the name of

Mrs. Diana SobanetDonations have been made in Mrs. Sobanet’s memory by:

Donna & Kevin DawsonMurfreesboro, TN

Margo LiebertCincinnati, OH

Linda ChouteauCincinnati, OH

Coba N. SchmahlCincinnati, OH

The Postel FamilyCleves, OH

James and Rose Marie HonerkampCincinnati, OH

A memorial fund has been established in the name of

Mr. Thomas SoudretteDonations have been made in Mr. Soudrette’s memory by:

Ruth CardellFlower Mound, TX

Laura Weaver & FamilyPortland, OR

Amy Stewart-DeakerAlameda, CA

John RegierBelmont, MA

A memorial fund has been established in the name of

Ms. Jane StewartDonations have been made in Ms. Stewart’s memory by:

Kenny and Tracey RomeroMiami, FL

Edward & Dorita LevensteinMiami, FL

Barbara GoldbergFt. Lauderdale, FL

Mitchell and Sherri PanterMiami, FL

Stanley and Frayda GoldenBoynton Beach, FL

Ruth Arndt, Sheryl,Gail and CindyBoca Raton, FL

Bunny ZinkermanHallandale, FL

A memorial fund has been established in the name of

Mr. Edward SchulmanDonations have been made in Mr. Schulman’s memory by:

Amanda GudmeDetroit, MI

Glenora SchumacherChatau Twp., MI

Virginia YezbickWaterford, MI

Donald M. HorneyGodfrey, IL

Richard & Deborah WheelerWaterford, MI

STMicroelectronics, Inc.Coppell, TX

Bill and Pat BlanchardHot Springs Village, AR

The Hagan FamilyWaterfod, MI

Betty S. AckermanLincoln, MI

Scott TarpeningWaterford, MI

Frank and Pam LeissiterBrookfield, WI

Dennis and Beth LappinOrtonville, MI

A memorial fund has been established in the name of

Ms. Helen TarpeningDonations have been made in Ms. Tarpening’s memory by:

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Rick and Barbara WherleyCleveland Heights, OH

A memorial fund has been established in the name of

Ms. Karen TittelDonations have been made in Ms. Tittel’s memory by:

Cassandra Crossing, Locust Valley, NY

A memorial fund has been established in the name of

Ms. Becky TurnerDonations have been made in Ms. Turner’s memory by:

Bruce LevineNorth Brunswick, NJ

Frank and Jeanette RuizRockaway, NJ

A memorial fund has been established in the name of

Mr. Robert Edward ThomasDonations have been made in Mr. Thomas’ memory by:

Donna and Dave BuntonArlington, VA

Joseph TothManalapan, NJ

A memorial fund has been established in the name of

Mrs. Jeanette TothDonations have been made in Mrs. Toth’s memory by:

Morton Nicholson andKristen StricklerRichmond, VA

Bob and Peggy Ellis, Mechanicsville, VA

Debbie BergtholdtEmporia, VA

A memorial fund has been established in the name of

Mr. Landon “Butch” Scott Temple, Jr.Donations have been made in Mr. Temple’s memory by:

Mike and Janet GlicksonMonroe Township, NJ

Jane R. PalmeterMetuchen, NJ

Bruce LevineNorth Brunswick, NJ

Frank and Jeanette RuizRockaway, NJ

Robert B. CountermanEdison, NJ

Frank and Patricia CullensChesapeake, VA

Irene RobertsBroomfield, CO

Joy HofmannFreehold, NJ

Mary Ann PalianiBoulder, CO

A memorial fund has been established in the name of

Mrs. Doris Kjersgaard ThomasDonations have been made in Mrs. Thomas’ memory by:

Leah FlemingWalkersville, MD

Grace FolsomLaytonville, MD

FINRA Finanace DepartmentRockville, MD

A memorial fund has been established in the name of

Mr. Raymond E. ThomasDonations have been made in Mr. Thomas’ memory by:

Elizabeth Bankstahl, Chesterfield Twp., MI

A memorial fund has been established in the name of

Ms. Carol L. WhiteDonations have been made in Ms. White’s memory by:

Brad and Diane Gordner, Ormond Beach, FL

A memorial fund has been established in the name of

Mr. Joseph Albert WalkerDonations have been made in Mr. Walker’s memory by:

Eileen Silvergleid, Washington, DC

A memorial fund has been established in the name of

Ms. Courtenay WallpeDonations have been made in Ms. Wallpe’s memory by:

Jennifer Hau, Houston, TX

A memorial fund has been established in the name of

Ms. Lila WandermanDonations have been made in Ms. Wanderman’s memory by:

Denise AparicioDallas, TX

Lois A. EgoroffEast Dundee, IL

Lorraine L. MessengerMount Prospect, IL

Craig and Jan ZaleskiPalatine, IL

A memorial fund has been established in the name of

Mr. Walter S. WolodkinDonations have been made in Mr. Wolodkin’s memory by:

Denver Public DefendersDenver, CO

Buzz and George Ann VictorEnglewood, CO

A memorial fund has been established in the name of

Dr. Jerry ZuckermanDonations have been made in Dr. Zuckerman’s memory by:

Rita SpiroBronx, NY

Richard and Susan AlinHartsdale, NY

Caryn DonocoffHartsdale, NY

Mark and Joan JosephsonBrookline, MA

Rich Weiss, Fleming, NJ

Meryl Schlussel MarkTeaneck, NJ

Rina SchunkArdsley, NY

Kenny and Bernice StraussYonkers, NY

Scott and Sherri LuckowArdsley, NY

Judith Wach, Baldwin, NY

Virginia (Ginny) MazzolaBronx, NY

Abraham and Liliane YurkofskyNew York, NY

Mr. and Mrs. Donald SmolevScarsdale, NY

Allen and Carol KleinHighland Beach, FL

Carol ConnollyNewton, MA

Joseph Ganger, Bayside, NY

Barry and Beth ZelinArdsley, NY

Jack and Barbara BarakTarrytown, NY

Neal and Wendy KorvalHartsdale, NY

A memorial fund has been established in the name of

Dr. Marcel ZimetbaumDonations have been made in Dr. Zimetbaum’s memory by:

Philadelphia Veterans AffairsPhiladelphia, PA

Richard and Sidney BlandRichmond, VA

A memorial fund has been established in the name of

Mrs. Gayle Lorraine (Timmerman) VollumDonations have been made in Mrs. Vollum’s memory by:

Mark and Mary KluchElk Grove Village, IL

Don and Jill KnightSouth Elgin, IL

Don and Susan AndersonElk Grove Village, IL

Jeannette KiehlPalatine, IL

Alan and Cindy Stoeckel and FamilyPalatine, IL

Tom and Jane Koeppen and FamilyElmhurst, IL

Richard and Leslie Kiehland FamilyEagle, WI

Patricia SchiavoneProspect Heights, IL

A memorial fund has been established in the name of

Mr. Paul VukelicDonations have been made in Mr. Vukelic’s memory by:

Bill and Rose CusackMassapequa, NY

Robert, Christine andAmelia LaroseMerritt Island, FL

A memorial fund has been established in the name of

Mr. John WallmanDonations have been made in Mr. Wallman’s memory by:

Paul C. WenzelSouth Easton, MA

Paul C. DestefanoNorth Reading, MA

George R. CostaStoneham, MA

Amy Wenzel-MellmanNorth Andover, MA

Anthony A. AnneseDanvers, MA

Carol CostaStoneham, MA

A memorial fund has been established in the name of

Mrs. Karen A. WenzelDonations have been made in Mrs. Wenzel’s memory by:

Suzanne Fleischman Memorial Fundfor Patient Advocacy

A fund has been established by the MDS Foundation in memory of SuzanneFleischman. Contributions may be sent to the Foundation with a notation designatingthe Suzanne Fleischman Memorial Fund for Patient Advocacy.

Thank You to OurPharmaceuticalSupporters

We would like to thank ourpharmaceutical supporters for theircommitment to the Foundation and itswork. They have contributed in the formof educational grants, which maintainsnot only this newsletter but also thedevelopment of the MDS homepageon the World Wide Web, the Centerof Excellence program, continuingmedical education programs, and thedissemination of patient information.

28

The Foundation’s Board of DirectorsJohn M. Bennett, MDProfessor of Medicine, EmeritusLaboratory Medicine and PathologyUniversity of Rochester Medical CenterRochester, New York, U.S.A.

David T. Bowen, MDProfessor of HematologySt. James’s University HospitalSt. James’s Institute of OncologyLeeds, United Kingdom

Mario Cazzola, MDProfessor of HematologyUniversity of Pavia School of MedicineHead, Department of HematologyIRCCS Policlinico S. MatteoPavia, Italy

Erin Demakos, RN, CCRNAdministrative DirectorMyelodysplastic Disease Center

and MPD ProgramMount Sinai School of MedicineNew York, New York, U.S.A.

Theo J.M. de Witte, MD, PhDProfessor of HematologyUniversity Medical Center Nijmegen St. RadboudNijmegen, The Netherlands

Pierre Fenaux, MDProfessor of HematologyHôpital AvicenneUniversity Paris 13Bobigny, France

Peter L. Greenberg, MDProfessor of Medicine/HematologyStanford University School of MedicineStanford, California, U.S.A.

Eva Hellström-Lindberg, MD, PhDAssociate Professor of HematologyKarolinska InstitutetInstitution for MedicineHuddinge University HospitalStockholm, Sweden

Sandra E. Kurtin, RN, MS,AOCN, ANP-CHematology/Oncology Nurse PractitionerArizona Cancer CenterClinical Assistant Professor of NursingClinical Assistant Professor of MedicineUniversity of ArizonaTucson, Arizona, U.S.A.

Alan F. List, MDExecutive Vice PresidentPhysician-in-Chief, andThe Frank and Carol Morsani

Endowed ChairH. Lee Moffitt Cancer Center& Research InstituteTampa, Florida, U.S.A.

Silvia M.M. Magalhães, MD, PhDProfessor of Clinical Medicine–

HematologyFederal University of CearáHospital Universitário Walter CantídioCeará, Brazil

Yasushi Miyazaki, MDChief, Dept. of HematologyNagasaki University Graduate School

of Biomedical SciencesAtomic Bomb Disease InstituteNagasaki, Japan

John Molle, CPAJRM Financial Associates, LLCFlemington, New Jersey, U.S.A.

Ghulam J. Mufti, DM, FRCP,FRCPathProfessor of Haemato-oncology

and Head of DepartmentHaematological MedicineKing’s CollegeKing’s College HospitalLondon, United Kingdom

Charlotte M. Niemeyer, MDProfessor of PediatricsUniversity Children’s HospitalFreiburg, Germany

Stephen D. Nimer, MDChairman, The MDS Foundation, Inc.Vice Chair, Faculty DevelopmentMemorial Sloan-Kettering Cancer CenterNew York, New York, U.S.A.

David P. Steensma, MDAssociate ProfessorDepartment of MedicineHarvard Medical SchoolDana-Farber Cancer InstituteBoston, Massachusetts, U.S.A.

Robert J. Weinberg, Esq.Pepper Hamilton LLPPhiladelphia, Pennsylvania, U.S.A.

Emeritus MembersTerry Hamblin, DM, FRCP, FRCPathBournemouth, United Kingdom

Franz Schmalzl, MDInnsbruck, Austria

MDS Foundation Information

Become a MemberThe MDS Foundation would like to

have you as a member. Membershipis US$50 a year for physicians andother professionals. Patients, theirfamilies, and others interested in MDSmay join at the reduced rate of $35.

Membership benefits includeissues of the MDS News, a specialsubscription rate of $119.00 forLeukemia Research (a substantialdiscount from the current institutionalsubscription rate of $2,373), and theworldwide Centers of Excellencepatient referral service.

Please visit us at:www.mds-foundation.org.

the myelodysplastic syndromes foundation, inc.