Volume 29 • Issue 5 Maryland Chapter

M O V I N G T O W A R D A W O R L D F R E E O F M S

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Baltimore, MDPermit # 3027

Maryland Chapter

2219 York Road, Suite 302Timonium, MD 21093

88 JOIN THE MOVEMENT: nationalMSsociety.org

MS Research –Your Questions AnsweredJanuary 20 & 22, 2015

MS and EmploymentFebruary 12 & 26; March 12 & 26, 2015

Managing MS Bowel & Bladder SymptomsMarch 17 & 19, 2015

The National MS Society telelearning program for people with multiple sclerosis and their families aims to provide information and guidance on current matters essential to living one’s best life with MS. Each free telelearning features topic-area experts by phone with online presentations and Q&A sessions.

Learn more and reserve your spot at www.nationalMSsociety.org/telelearning or call 1-800-344-4867.

Connect to the Information You Need

Sex Ed for Grownups – Intimacy in MSMay 19 & 21, 2015

Gender Differences in MSJuly 21 & 23, 2015

Preparing for MS Doctor VisitsSeptember 15 & 17, 2015

Ed FrereChairman of the BoardU.S. BankSenior Vice President

Daniel Becker, M.D.International Neurorehabilitation Institute Director

Wendy BordewischNielsenVice President,Strategic Account Development

Peter A. Calabresi, M.D.Johns Hopkins Multiple Sclerosis CenterDirector

Desmond D. Connall, Jr. *Ballard Spahr LLPPartner

Christina Hedge *CareFirst BlueCross BlueShieldSenior Director,Strategic Account Solutions

Jan HoffbergerCommunity Volunteer

Dale HollingerAlleghany PowerRetired

Tom MonteleoneAncile SolutionsChief Financial Officer

Kevin Oster, C.C.M.PNC BankVice President

JR PaterakisH&S Bakery Inc.Vice President, Marketing and Sales

Jon RepettiClear One AdvantageExecutive Vice President

Wayne ResnickMartin’s CaterersPresident

Tim RhodeMaryland Athletic ClubOwner/Chief Executive Officer

Walter Royal, III, M.D.University of Maryland Centerfor Multiple Sclerosis Treatment& ResearchDirector

Donna SenftOBER|KALERPrincipal

Chris Scholtes, C.P.A.C.E.A. Scholtes & AssociatesPresident

Greg ShuckmanUniversity of Central Florida Assistant Vice President

Robert TobinPersimmon Capital PartnersChief Investment Officer

Kathy Volk, Ph.D.Towson University, Adjunct ProfessorRetired MSDE

Gary WeishaarNASAOffice of the Inspector General

Jenette YoungComForCare Home Care ServicesPresident

Timothy M. Zulick, SIORFirst Potomac Realty TrustSenior Vice President

*New Board Member

Welcome to the FY15 Board of Trustees

In 2014, the National MS Society invested $50 million in support of 380 research investigations around the globe, including several here in Maryland. Thanks to donations from people like you, we are able to fund this important research to STOP MS, RESTORE lost function and END MS forever.

One project, recently launched by Dr. William Culpepper at the Veterans Affairs Medical Center in Baltimore, explores whether a comprehensive care approach results in better outcomes for people with MS. Other local investigations at Johns Hopkins and University of Maryland are exploring the impact environmental factors, such as Vitamin D and smoking, have on MS diagnosis and disease progression.

Three MS researchers recently shared their expertise with over 200 attendees at the Maryland Chapter’s Research Symposium and Volunteer Awards, held at Martin’s West in Baltimore. Walter Royal, III, M.D. of the University of Maryland discussed the impact of cigarette smoke on people who are at risk of developing MS. Daniel Becker, M.D. of the International Neurorehabilitation Institute explored how recreational activities like SCUBA diving and high altitude skiing

MS Research Advancements Flourish in 2014

continued on page 3

TOLL FREE NUMBER 1 800 344 4867 382 JOIN THE MOVEMENT

A Message from the Chapter President

Publication of theNational Multiple Sclerosis Society,Maryland Chapter2219 York Road, Suite 302 Timonium, MD 21093

For general information: 443-641-1200 or800-344-4867

If You or Someone You Know Has MS Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at www.nationalmssociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. We do reserve the right to refuse advertising that appears to be inconsistent with the Society’s mission.

Information provided by the Society is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.

The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS. © 2014 National Multiple Sclerosis Society, Maryland Chapter

can impact people living with MS. Finally, Ellen Mowry, M.D. of Johns Hopkins shared insight on the impact of nutrition and Vitamin D on MS progression. Attendees asked the panel of doctors a variety of questions about living with and treating MS. Question topics included: the impact of Vitamin D and diet on MS; stem cell treatment for MS; holistic approaches to treating MS; and what to consider when trying a new treatment or medication.

The National MS Society funds many investigations addressing these topics and plans to increase research funding to $54 million in 2015 as we seek to accelerate breakthroughs. Furthermore, this year we took on an additional leadership role in launching the International Progressive MS Alliance, which encompasses MS societies from around the world. In September, the Alliance announced its first round of 22 pilot studies in nine countries. Priorities of the Alliance include: better understanding of progression so treatments can be identified; designing shorter, faster clinical trials; conducting trials to test agents that stop or reverse progression; and developing and evaluating new therapies to manage symptoms. This ambitious program will forge international collaborative research networks – leveraging research already underway and stimulating new research through the Alliance’s significant funding programs.

In addition, 75,000 activists across the country have banded together to secure an additional $25 million in government research for MS over the last six years. These funds went toward funding MS research in the Congressionally Directed Medical Research Program, a peer-reviewed program that funds important, innovative research. The program encourages projects that address critical needs of the MS community and concentrate on: the biological basis of disease progression; risk factors leading to the prevention of MS; drug discovery; and biomarkers for preclinical detection of MS.

The Society’s $870 million investment has fueled decades of research into MS, building a platform of knowledge now serving as a springboard for progress. We fund more MS research than any other organization in the world.

We have recruited more than 800 new MS researchers who are dedicated to improving the lives of people with MS. We are recognized as the catalyst for all major advancements in MS, including paving the way for 11 FDA-approved disease-modifying therapies – none of which existed 20 years ago. And now we are turning our attention to exciting new lines of research, including nerve and mylein repair as well as wellness research, including diet, exercise and complimentary and alternative therapies.

We are relentless in our efforts to find new treatments and solutions for people with MS so they are able to live their best lives. The Society’s research breakthroughs have enabled us to better understand the disease, how susceptible someone is to developing it and how to maintain a high quality of life and manage symptoms if they are diagnosed. With continued research funding, the Society will remain the driving force of MS research, gaining new insights and strategies, which will bring us closer to a world free of MS.

continued from cover

Daniel Becker, M.D., Ellen Mowry, M.D. and Walter Royal, III, M.D. take questions from the audience at the 2014 Research Symposium

MS activists on Capitol Hill at the Rally for Medical Research

Mark Roeder Chapter President

Randee Sanders, D.Mgt Advocacy, Programs and Services Director

Shelbi Bivons Development Director

Todd Robertson Services Navigator

Ellen Hannibal Volunteer Manager

Melanie Losover Marketing Specialist

In this issue, we are pleased to share many research highlights from the past year. There can be no doubt that there has never been a more hopeful time for MS breakthroughs. The record investment that the Society made in research in 2014 – more than $50 million – accelerates our search for answers, as does the Society’s leadership of the newly-formed International Progressive MS Alliance.

Here at the Maryland Chapter, we are proud to help fuel this progress as roughly 40 cents out of every dollar we raise directly supports our National research initiatives. The remaining dollars you generously entrust to us are utilized for local programs, services and advocacy. So, what did we accomplish in these areas in 2014?

Starting with advocacy, our Chapter had a busy and productive year in Annapolis. In February, 113 activists shared their stories with members of the House of DeIegates and State Senate on Maryland Action Day. These visits clearly had impact. We fought to maintain $10.4 million in the State budget for stem cell research. We successfully advocated for the Medicaid program to reimburse health care providers for services delivered via telemedicine. And, we joined with several like organizations to drive legislation – signed into law in May - capping out-of-pocket costs on specialty drugs, including MS therapies.

More than 1,000 individuals affected by MS participated in a Chapter program during 2014. These included our popular Discovery Weekend family retreat, educational teleconferences, support groups, our Everyday Matters seminar series, rural outreach programs, and in-service training to healthcare practitioners. We also assisted 1,600 constituents through our Information and Resource Center and thousands more Marylanders connected with us and to each other through our blog site,MSconnection.org.

The Maryland Chapter also provided more than $300,000 in direct financial assistance in 2014 to help meet the daily challenges of living with MS. We received requests throughout the year for emergency rent and utility assistance, respite care, accessibility modifications and durable medical equipment. We also leveraged $45,000 in additional support from community resources on behalf of people with MS.

Of course, we cannot do any of this without your help. At this time of year, it is especially appropriate to thank you for your passion, dedication and support. You have brought us to this hopeful time. I also ask that you renew your financial commitment. Your gift today will help us to continue changing the world for people affected by MS.

On behalf of the Maryland Chapter staff and volunteer leadership, I wish you and yours health and happiness this holiday season.

April 11 – Ocean City FrederickApril 12 – Salisbury TowsonApril 18 – Hagerstown

April 19 – Annapolis Bel AirApril 25 – Columbia CumberlandApril 26 – Baltimore City Westminster

MS

All Walk MS events are 5K walks (about 3 miles). Everyone who raises at least $100 will get a commemorative t-shirt at the event. Help us reach our goal of $1.5 million this year!

5TOLL FREE NUMBER 1 800 344 4867 54 JOIN THE MOVEMENT: nationalMSsociety.org

AUTOS-4-MS

We received $350 We received $575

We received $1,200We received $4,200

We received $4,200 We received $11,750

We accept all vehicles, regardless of condition

Donate your car, bike, RV or boat before

December 31 to get your 2014 tax deduction!

100% of proceeds go to the National MS Society

www.AUTOS4MS.orgHelp drive MS away - donate your vehicle today!

Donating is easy - simply click or call:

www.AUTOS4MS.org or 1-877-672-8864

JOHN DAHLQuISTVolunteer of the Year

SHAWN DuFFYExcellence in Mission Advancement

LAuRIE KLINEExcellence in Mission

Advancement, Rookie of the Year

SANGJIN OH, M.D.Healthcare Provider of the Year

BERTuCCI’SCorporate Partner of the Year

ABIGAIL PINTOFundraiser of the Year

TEAM GEARED FOR GOODFundraising Team of the Year

On October 27, the Maryland Chapter was thrilled to present seven Ed Duggan Community Champion Awards to community leaders who are driving the mission of the National MS Society forward. Awards in healthcare, mission advancement, fundraising and corporate partnership were given to people who were nominated by the community. Ed Frere, Chair of the Board of Trustees, who appears in several photos below, presented the Community Champions Awards to each of our very deserving recipients. “The Ed Duggan Community Champion Awards were created in the spirit of honoring one of our most tireless and passionate volunteers, Ed Duggan,” explained Mark Roeder, Chapter President. “The recipients of these awards are part of an elite group of mission advocates who go the extra mile to make their mark and drive change locally, statewide and nationwide.” It is our honor to celebrate and recognize the work that all our volunteers, activists, ambassadors and partners to do help drive us toward a world free of MS.

Maryland Chapter Honors Top Volunteers of 2014

JOIN THE MOVEMENT: nationalMSsociety.org6 TOLL FREE NUMBER 1 800 344 4867 7

The National Multiple Sclerosis Society recently sat down with Dr. Jeffrey Cohen, director of the Experimental Therapeutics Program at Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research to talk about mesenchymal stem cells as a treatment for both progressive and relapsing forms of MS. At the Mellen Center since 1994, Dr. Cohen has been involved in various capacities in a large number of clinical trials developing new therapies for multiple sclerosis.

Could you explain the procedure that you’re testing?

The type of stem cells we are testing are called mesenchymal stem cells. These cells are present in many tissues of the body, and have been studied fairly extensively. In our study, the stem cells were extracted from the patients’ bone marrow, then grown in the lab to purify them and increase their numbers. They are then injected intravenously back into the patients.

Why did you choose to look at mesenchymal stem cells?

We chose to look at these cells because they have the potential to treat MS. First, the cells appear to have neuroprotective or tissue-protective properties. Second, the cells may encourage natural repair mechanisms within the damaged tissue. Third, these cells have some immune-modulating properties. Finally, they appear to be able to move from the blood into tissues that are inflamed or damaged. This makes it more convenient to administer the cells.

Research also suggests that we don’t have to inject the cells directly into the nervous system. Instead, we believe we can introduce them intravenously or through a spinal tap, and the cells will find their own way to the areas of damage.

This two-day cycling event is hosted at the Talbot County Community Center in Easton, MD.

Participants will enjoy the quaint, scenic waterfront communities of Tilghman Island, Oxford, St. Michaels and Trappe. Cyclists will enjoy lunch at Bellevue Park

and will ride on the Oxford Bellevue Ferry to continue cycling along the route. After crossing Saturday’s finish line, cyclists, their families and supporters are invited to enjoy dinner, beer, wine and music to celebrate the

day’s accomplishments.

As always, Bike MS: Chesapeake Challenge is fully supported with SAG vehicles, bike mechanics, medical

professionals and cheering volunteers to keep you pedaling to the finish line. All participants commit to raising at least $300 to fund research into the cause,

cure and treatment of multiple sclerosis.

Join us forBike MS: Chesapeake Challenge!

June 6 - 7, 2015

REGISTER TODAY!

bikeMS.org

What are you expecting to learn from this study?

The phase I study we just completed focused on the feasibility and safety of the procedure. The results were very encouraging; we didn’t encounter any practical issues or safety concerns, and there were very few side effects. We also took a preliminary look at benefit – both reported by patients themselves and clinical measures – and a range of advanced imaging and immunologic techniques in preparation for what we hope will be a larger study.

Who was included in the trial?

We enrolled 24 people with MS, approximately half with relapsing-remitting MS and half with secondary-progressive MS. Because this was a preliminary safety study, people on certain medications, such as immune-suppressing drugs, were excluded. We wanted to make sure that if someone had a complication, we knew whether it was due to the cell therapy or the medication. There is also concern that some disease-modifying therapies may interfere with the ability of mesenchymal cells to migrate to or to repair damage.

Is there any advice or caution you would offer people who want to consider stem cell transplantation?

I share in the excitement and interest in cell-based treatment for MS – it shows a lot of promise. I also appreciate that people are anxious to pursue those therapies now. We were pleased that the study went so smoothly, but it was apparent that there were a lot of issues related to stem cells, including uncertainties of how best to grow them, where to isolate and administer them, and the optimal dose. At this point I think it is premature to pursue cell-based therapies outside of a carefully conducted, formal clinical trial.

How does someone find such a trial?

Both www.clinicaltrials.gov and the Society have a listing of ongoing studies—visit www.nationalMSsociety.org/clinicaltrials. The International Society for Cellular Therapy at www.celltherapysociety.org is another useful source of information on cell-based therapies. General questions people should ask are: What is the rationale for this particular cell therapy? What kind of experience do the investigators have? What is the plan to monitor for safety? I think a red flag would be if the plan is to have the cells administered and send you home with no follow-up.

What makes you so excited about research in this area?

It’s a large area of unmet need in MS and other conditions in which there is injury to tissue. The work that has been done so far has been very promising. I believe cell-based therapies are going to be a big part of medical practice in the future. The particular cells that we studied are the initial endeavor, but there is a number of other more advanced cell therapies being developed. I think there’s a good chance that in the future this is going to be how we treat a lot of diseases.

Talking About Stem Cells

Let your voice be heard at Maryland Action DayEveryone has a voice! Let yours be heard at Maryland Action Day! Let your elected officials know what’s important to you and share your story of how MS has affected your life. Join us as we gather in Annapolis on Thursday, February 26, 2015 to visit in person with our senators and delegates.

We will be advocating for legislation related to accessible, affordable transportation, employment for people with disabilities and affordable, accessible housing.

On the day of the program, participants will receive specific issue preparation including talking points to share with their legislators. State representatives will be present to speak to attendees regarding the legislation we are advocating. Participants will then visit with their legislators, share their stories and let them know what legislation is important to people living with MS. The day will end with a general wrap-up session. A continental breakfast and boxed lunch will be served.Registration will open in mid-December. Visit www.MSactionday.org to reserve your place!

JuNE 6 - 7, 2015