What’s New at the APF www.porphyriafoundation.com

Is Your Membership and Contact Info Up to Date? The

APF is able to maintain our physician and patient education

programs and many other services because of your support.

Since we do not receive government funding, we need your

support and donations. We also need your new contact

information if you have a new address or email. Be sure to

send us your email address so you can receive the ENEWS.

Protect the Future program to train future experts is

important. Please consider making a donation to this

program. Yours and your children’s future health depends on

each of us supporting the training of doctors who will know

how to treat us and perform research when our present

experts retire. We have the opportunity to fund this training

now so that the present expertise is not lost. Please send

your donations to the APF and mark them PTF. They will be

placed in the PTF fund to be used for the training of young

doctors as future porphyria experts.

4900Woodway,Suite780,Houston,TX77056

Addressservicerequested

The information contained on the American PorphyriaFoundation (APF) Web site or in the APF newsletter isprovided for your general information only.

The APF does not give medical advice or engage in thepractice of medicine. The APF under no circumstancesrecommends particular treatments for specific individuals,and in all cases recommends that you consult yourphysician or local treatment center before pursuing anycourse of treatment.

All information and content on this Web site are protectedby copyright. All rights are reserved. Users are prohibitedfrom modifying, copying, distributing, transmitting,displaying, publishing, selling, licensing, creating deriva-tive works, or using any information available on orthrough the site for commercial or public purposes.

U.S. PostagePAID

Houston, TexasPermit No. 7279

4th Quarter, 2013

Merry Christmas, Happy Hanukkah, Happy Holidays Happy, Healthy New Year

May you be blessed with happiness, good health, love and the delight of being with family and

friends this wonderful Christmas and Holiday Season. The opportunity to serve you and your

family during this past year has been a gratifying experience for us. Our staff and support vol-

unteers look forward to meeting and assisting you throughout the upcoming

Happy, Healthy New Year. God Bless YOU! Yvette, Elizabeth, Susan, Carol, Warren, Desiree and Facebook Team, Rob, Amy C, Amy B, Victor, Ben, Pierre

Akshata Moghe, MBBS, PhD is our newest Protect the Future (PTF) doctor. As a reminder,

the PTF program was designed to prepare for the void that will be created upon the retirement of our

present group of experts. Twenty young experts have been trained via the APF-PTF program. Dr.

Moghe became acquainted with the porphyrias and the PTF program when she attended a conference

and met Dr. Karl Anderson, director of the University of Texas Medical Branch Porphyria Center and

Laboratory, as well as Co-Chairman of the Porphyria Research Consortium. Her interest in the porphy-

rias led her to UTMB where she has been working with Dr. Anderson since February as the Clinical Re-

search Coordinator and Research Associate. According to Dr. Moghe, ”It has been a wonderful experience learning from Dr. Anderson and the porphyria patients at UTMB. I hope to continue to grow as a porphyria physician and researcher under his mentorship." The APF is grateful to have such an

esteemed young doctor help us Protect Your Future health.

Dr. Moghe earned her 2007 Bachelor of Medicine and Bachelor of Surgery at the Seth G.S. Medical College and King

Edward VII Memorial Hospital in Mumbai, India where she also attended the Maharashtra University of Health Sciences. She

graduated with Distinction honors in Anatomy, Biochemistry, Pharmacology, Pathology, Microbiology and Forensic Medicine. In

2010, she went on to earn a Master of Science in Pharmacology and Toxicology and a Doctor of Philosophy in Pharmacology

and Toxicology at the University of Louisville, KY.

Dr. Moghe’s Clinical and Research positions include her present position at the UTMB Porphyria Center, Dept. of Preven-

tive Medicine and Community Health in Galveston, Texas. Her previous position was as graduate Research Assistant at the Uni-

versity of Louisville, School of Medicine where her research focus entailed the role of chromatin remodeling in curcumin-

mediated regulation of gene expression in hepatocellular carcinoma. Prior to that she worked at the National Institute for Re-

search in Reproductive Health (NIRRH) in Mumbai focusing on viral variants in blood and semen of HIV infected patients and

their association with disease pathogenesis. Aside from her heavy work schedule, Dr. Moghe is involved in a number of volun-

teer community services, like counseling high school students on clinical and research career options in the medical field, con-

ducting medical camps and AIDS awareness projects, as well as serving as a volunteer for leprosy, vaccinations, flood relief and

bomb blast relief to name a few.

Among her many Fellowships, Scholarships, Honors and Awards are:

2002, 2003 and 2004 Ratan Tata Scholarship for Academic Excellence in Medicine/Surgery

2012 Department Scholar Award, School of Interdisciplinary and Graduate Studies (SIGS), University of Louisville

2012 Sponsored Research Tuition Award, SIGS, University of Louisville

2012 The Guy Stevenson Award for Excellence in Graduate Studies, the university’s most outstanding doctoral degree recipient

who excels in scholarship, leadership, and other areas within their discipline, University of Louisville

2012 Commencement Speaker, Doctoral Hooding and Graduation Ceremony, Freedom Hall, University of Louisville

2013 K.C. Huang Outstanding Graduate Student Award, Pharmacology and Toxicology, University of Louisville

Below are a few of her upcoming publications:

1. Akshata Moghe, Bryan Lamoreau, Mohammad Mohammad, Shirish Barve, Craig McClain and Swati Joshi-Barve, Mechanisms of Acrolein Toxicity: Relevance to Human Disease’ (under review, Free Radical Biology & Medicine) 2. Akshata Moghe, David Barker, Smita Ghare, Leila Gobejishvili, Swati Joshi-Barve, Craig McClain and Shirish Barve, ‘Pro-moter histone acetylation plays a major role in the reactivation of tumor suppressor TFPI-2 gene expression in hepatocellular carcinoma’ (in preparation)

THE "PTF" PROGRAM TO TRAIN FUTURE EXPERTS IS SUPPORTED BY YOUR DONATIONS.

Thank YOU for supporting this program in the past. Please help us to continue the "PTF" program.

If you would like to support the "PTF" program, please mark your donations “PTF.”

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Yvette, Elizabeth, Susan, Carol, Warren, Desiree andFacebook Team, Rob, Amy C, Amy B, Victor, Ben, Pierre

Panhematin®News Panhematin®, the only commercially available heme therapy in the

United States, was purchased by the Recordati Rare Diseases (RRD). Therefore, the method to

order Panhematin® has changed. Please advise your doctors and hospitals of the new means to

contact RRD to order the treatment or gain assistance. Healthcare providers can place their order through

their primary wholesaler or call !""#"$%#&$'( or fax ")%#$$'#&$'(. Shipments will be delivered in a shipping box from

ASD Healthcare via UPS Next Day Delivery. For assistance, call !""#*&(#+"&%, M-F 8AM-5PM CT. RRD medical

information. Contact: !!!#$+$#!'%% or ,-./012345-635.78/575-./9-79-9#63,.

Continuing Medical Education (CME) Course Physicians are required to have Annual

Continuing Medical Education (CME) courses. Fortunately, YOUR doctors have the opportunity to take

this outstanding CME course about Acute Porphyrias and receive FREE CME credit. Please tell your

physician about this course, which was offered last year and has been brought back by demand and is

offered at the following link. CME courses require registration but most physicians are already

registered. Registration is free and simple.

Acute Porphyrias: Recognition Through Follow-Up CME

http://www.medscape.org/viewarticle/712889

Porphyria experts, Herbert L. Bonkovsky, MD; Manisha Balwani, MD, MS; Karl E. Anderson, MD; Bren-

dan Martin McGuire, MD, MS (in photo) are the Faculty. CME for credit is valid through 07/08/2014.

This activity is intended for hematologists, gastroenterologists, primary care physicians, emergency medicine physicians,

obstetricians/gynecologists and other healthcare professionals who may encounter patients with the acute porphyrias. The goal

of this activity is to provide an informative discussion on some of the major issues associated with acute porphyrias, including

recognition, evaluation, treatment, complications, and prevention.

Upon completion of this activity, participants will be able to: Recognize signs and symptoms of and conduct appropriate

testing to promptly and accurately diagnose the acute porphyrias, evaluate current recommendations and emerging approaches

for the management of the acute porphyrias and discuss complications associated with the acute porphyrias and their

treatment.

Emma Gonzalez-Rivera "I live in Sorrento, Florida now, but I lived near the Mohave Desert

for the last 14 years. I don't know if I was born with PCT, but I always had health problems. Menopause was too early, and the gynecologist put me on the Estrogen therapy. Eventually, I got endometrial cancer and had a complete hysterectomy. For one year everything seemed to be fine. Then my urine turned very dark, and I began to get frequent bladder infections. I continued to visit the ER very often and my skin began to get dark, especially on my forehead and cheeks and hair grew on my face. Doctors did not know what was making me sick even when my liver enzymes were very high. I was so ill my sister cried when she saw me. Desperate, I visited a dermatologist. When he reviewed my case, he wrote, Porphyria Cutanea Tarda, and asked me to research it. He took a skin biopsy and blood tests. He was correct. I had PCT. Now I have a good hematologist who keeps in touch with Dr. Casey, the dermatologist - my hero. The first year I began the phlebotomy treatment. I had it done every month and sometimes every two weeks. Now I have it every six weeks depending on the ferritin level. I feel tired and not well, but once I have the phlebotomy, I am full of energy. My skin is a bit lighter and the urine is normal. The liver enzymes are almost normal and the facial hair is controlled. I still have to stay away from the sun and my skin is fragile. If you have PCT, I know how you feel, but you just have to learn how to live with it with patience and faith. You will get well. God Bless You!"

Notice from Dr. Peter Tishler "I hope you have been using the APF Drug Database

(http://APFdrugdatabase.com), which we established some years ago. I am updating the drug database once again, to add new medications and reinforce or change the safety of existent medications. Thus, I write once again to ask all APF members with an acute porphyria (acute intermittent porphyria AIP, variegate porphyria VP, hereditary coproporphyria HCP, ALA dehydratase deficiency porphyria ALAD) to provide information regarding your medications." Dr. Tishler, who is a porphyria expert and genetics professor at Harvard Medical School, has voluntarily

maintained the drug list for the APF for many years. The APF and our 5000 members express our

sincerest thanks to Dr. Tishler, not only for his enormous work with the drug database, but also for

helping so many porphyria patients who are devoted to him as their physician. His recent publication,0

!"#$%&'#$()$*+,"(*"-'&(.(/&0$%#'#+%0"$ &1$,"#$21&,#3$4,+,#'5$ ,"#$%(.#$()$ ,6($7+%8+%3$"('*&,+.'9$(Perspective in Biolology and

Medicine 2013 Spring;56(2):244-50. doi: 10.1353/pbm.2013.0010) is very interesting and concerns a major approach to

understanding and treating disease.

Editor’s Note: If you have not received the Evaluation of Medications for Acute Porphyrias form from the APF and Dr.

Tishler, we can send you another one soon. You can request a form via email porphyrus@aol.com or call the APF 866.APF.3635.

Sharing your experience about a specific medication can be very helpful, so your participation is greatly needed in this project.

Please return the form to the APF as soon as possible. It will then be forwarded to Dr. Tishler.

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Exciting New AIP Treatment in Development Dr. William

Querbes, President of Alnylam Pharmaceuticals, made an exciting presentation at

the International Congress about Alnylam’s development of an entirely new class

of innovative medicines based on a breakthrough discovery in biology known as

RNA interference, or RNAi. With RNAi technology, they have the opportunity to treat diseases and impact the lives

of patients in a fundamentally new way by silencing disease-causing genes upstream of today's medicines. ALN-AS1

is a subcutaneous RNAi therapeutic targeting aminolevulinate synthase-1 (ALAS-1) for the treatment of acute inter-

mittent porphyria (AIP). ALN-AS1 has the potential to be a therapy for the treatment of acute porphyria attacks, as

well as a prophylactic approach for the prevention of recurrent attacks. (Alnylam’s name has interesting significance as Alnylam is the name of the center star of Orion's belt. The star has a luminosity that is 250,000 times greater than the sun, representative of the potential strength that RNAi therapeutics could bring to bear for human health.) The APF will be announcing updates on the treatment and clinical trials.

APF Caretaker Support Group Warren Hudson, who serves on the APF Board of Directors, will head

our new 'Caretaker Support Group' for spouses, partners or friends who help their loved one cope with porphyria.

This is a very important service because being a caretaker can be extremely difficult. If you

would like to participate in the Caretaker group or speak with Warren, please contact the APF.

Here is Warren’s story. "Porphyria is a large part of my life effecting relationships and day-to-day activities. It affects my ability to work, what kind of jobs I can take and how I take care of my family. Porphyria costs me friendships and takes a great mental and physical toll. I am extremely afraid of visiting new doctors, so I go prepared with questions and the expectation of disappoint-ment or rejection. The horror related to a hospitalization is something I am unable to express. I know my story is common for those suffering from an Acute Porphyria. However, I do not have

Porphyria. I am the husband and caregiver of someone with Acute Intermittent Porphyria (AIP). My experience lacks the physical pain but gives me a front row seat to hers and confronts me with an overall feeling of helplessness.

The role of caregiver for a Porphyria patient has been largely unexplored. Obviously, the patient is everyone’s primary concern—as they should be our focus. However, a strong healthy caregiver provides better long-term support. It is all too easy for both caregiver and patient to focus on the patient. In my case, this comes with conse-quences. At first, both my wife and I treated AIP as something separate from our relationship and our lives. This was unrealistic and fed many disappointments for both of us when we realized the disorder could not be ignored. We strive to understand how it is part of our lives and work together to limits its effect. I wanted to share some experiences, provide insight and hopefully help others in my position. Porphyria caregivers also rarely communicate enough with other caregivers and often bottle up their emotions, focus solely on our loved ones and in my case, in-ternalize my frustrations and fears. This can be isolating and unhealthy. I took my personal concerns, pains or ill-nesses and measured them up against what my wife experienced. In comparison, my problems seemed petty. If I got sick, I treated my illness like something I should push through or shrug off. Not caring for myself, affected my health resulting in a large weight gain and depression. Even when those closest to me were concerned and wanted to talk, I held back details because it felt like I was betraying my wife by discussing her AIP and how it affected me.

The irony of putting someone else’s needs ahead of your own is that both people suffer. It is critical that those of us in the caregiver role take the time to ensure our own needs are being met and that we do not neglect the most important person, ourselves. In order for our spouses and loved ones to get the care they need, it is im-perative that we take care of ourselves both mentally and physically. Reach out to other caregivers if you need ad-vice or a sympathetic ear. Get involved in things that bring you joy. These have been hard lessons for me to learn, and something I struggle with on a daily basis. If you remember anything else, please know neither the patient nor the caregiver is alone in this journey." See the entire article on the APF website in the new 'Caretaker Section.'

'Warning Card' and Doctor Packet If you do not have a free APF Wallet 'Warning Card' for acute

porphyria or a free Doctor Packet for your physician, please request one or both from the APF by emailing:

porphyrus@aol.com or calling 866.APF.3635. The cards are a perfect fit for your wallet and include the URL for the

Safe/Unsafe Drug List. The Doctor’s Packet is very comprehensive and includes, CME course information, drug information, Pan-hematin® brochure, Management of Acute Porphyrias brochure, as well as major medical journal articles written by

our Scientific Advisory Board of experts. Over 3000 doctors have either requested this packet or received them from

patients. This packet educates your doctor how to diagnose and treat the acute porphyrias. Please send the APF

your doctor’s contact information, and we will mail a packet to them immediately.

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Shawn Willis, an APF member (left with mask), has EPP. He has been very

active both with the APF and the APF Facebook groups. Shawn has an amazing

story to tell that shows us again that despite our health challenges, we can make a

big impact in this world. Read Shawn’s most recent adventure: "Several months ago, I went to Uganda while in the last stages of the drug trial. I was so thankful to have had the active drug. In my opinion, at that time it was the only way I would be able to ever visit my friend, who runs an orphanage in Kampala. My trip was wonderful, and I thought that was the end of my travels until the drug finally comes to market. God had other plans. I began praying about going back again

this spring. I was very nervous about being in Africa without the protection I had previously with the implant. I returned to Kampala in late March and I’m so thankful to say, everything went very well. While I was at the orphanage working outside, I would wear my mask. When we would travel in the car, I also wore it. Once we got to our destination, I would transition to a large brimmed hat I purchased from 'Sun Precautions.' I spent 10 days in Uganda and everything was wonderful! God is so faithful! If anyone would like to join me on a future mission trip, I would love to walk with you through the challenges of our condition while working to serve others who desperately need our help. The picture shows me all covered helping build picnic tables for the kids, because typically, the children eat on the floor of their homes."!!

Monica Fleegel is a very busy lady as the Director of Human Resources

at Mayo, but she gladly took on the heavy responsibility of traveling from Minnesota to clinical trials in Alabama for the Phase II and Phase III clinical

trials testing SCENESSE. But she didn’t stop there. Recently Monica gathered

her friends and family for a triple fold purpose during Porphyria Awareness

Week. She hosted a fantastic BBQ for family and friends as part of a fund-

raiser for the APF. While they were enjoying themselves, she also asked

them to join in a letter writing campaign to the FDA to tell them about EPP and Monica’s experience from their viewpoint. They wrote about Monica and her struggle with EPP,

how she could not enjoy normal daily activities like a simple walk outside or a trip to the beach.

They also wrote about the greatest summer of her life when she was given the SCENESSE. Since

the trials have a few months before completion and the data assessed, the attendees asked the FDA

to approve the treatment quickly. Once again, without treatment, Monica and other EPP people are left to “fry” in the summer sun. The letters were all compelling. The Fleegel family has five siblings

who have EPP, Monica, Theresa, Bill, Rita and Tom and all but one were on the clinical trials and all

are in the Longitudinal Study. We sincerely appreciate the Fleegel family and all of Monica’s family

and friends who participated in this awareness and fundraising event. And thanks To Monica’s

daughter Addie, who made the APF cookie. Yum!!! Photo L to R Addie, Monica, sis-in-law Kathleen, brothers Pat and Tom.

Victoria Harrold "I am 28 years old and live in England. I was finally diagnosed with EPP at the age of 24

after a long struggle. Because of my own difficulty getting diagnosed, I now want to help raise awareness for this condition and encourage those who suffer in silence to fight to get someone to listen to them. My childhood in the spring/summer seasons was not a happy one. School was awful for me, because I was burning and no one believed me, and my skin was so scabby, the kids at school called me monkey, gremlin, alien etc. Even when my face was so swollen that my lip pushed up my nose and my knuckles disappeared when my hands were swollen and my feet were so swollen I needed a wheelchair, the doctors still continued

to misdiagnose me. Doctors said I was attention seeking and put me on anti-depressants to cope. After years and years of misdiagnosis and hospitalizations, a new dermatologist who tested me for EPP solved the mystery."

!Jessica Hawkins Ivey helped with Awareness Week and our letter writing campaign to

the FDA. Jessica participated in Phase II, the first round of clinical trials, and was very helpful

to those who participated in the Phase III trials by sharing her experience. She also amassed

a large number of letters for the FDA. Jessica has her Master’s in Nursing and has worked in

neurosurgery, orthopedics and nursing informatics. She now is the Nursing Clinical Manager in the perioperative division at a Midland, Texas hospital. Despite her busy schedule and long

hours, she flew back and forth from her Midland home to the 'Galveston Porphyria Center' for

the clinical trials. Jessica, thanks for all you have done for the APF and to move a new treat-

ment forward for all EPP friends. (Some of the above members have a full story on the APF website.)!

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Shawn Willis, an APF member (left with mask), has EPP. He has been very

active both with the APF and the APF Facebook groups. Shawn has an amazing

story to tell that shows us again that despite our health challenges, we can make a

big impact in this world. Read Shawn’s most recent adventure: "Several months ago, I went to Uganda while in the last stages of the drug trial. I was so thankful to have had the active drug. In my opinion, at that time it was the only way I would be able to ever visit my friend, who runs an orphanage in Kampala. My trip was wonderful, and I thought that was the end of my travels until the drug finally comes to market. God had other plans. I began praying about going back again

this spring. I was very nervous about being in Africa without the protection I had previously with the implant. I returned to Kampala in late March and I’m so thankful to say, everything went very well. While I was at the orphanage working outside, I would wear my mask. When we would travel in the car, I also wore it. Once we got to our destination, I would transition to a large brimmed hat I purchased from 'Sun Precautions.' I spent 10 days in Uganda and everything was wonderful! God is so faithful! If anyone would like to join me on a future mission trip, I would love to walk with you through the challenges of our condition while working to serve others who desperately need our help. The picture shows me all covered helping build picnic tables for the kids, because typically, the children eat on the floor of their homes."!!

Monica Fleegel is a very busy lady as the Director of Human Resources

at Mayo, but she gladly took on the heavy responsibility of traveling from Minnesota to clinical trials in Alabama for the Phase II and Phase III clinical

trials testing SCENESSE. But she didn’t stop there. Recently Monica gathered

her friends and family for a triple fold purpose during Porphyria Awareness

Week. She hosted a fantastic BBQ for family and friends as part of a fund-

raiser for the APF. While they were enjoying themselves, she also asked

them to join in a letter writing campaign to the FDA to tell them about EPP and Monica’s experience from their viewpoint. They wrote about Monica and her struggle with EPP,

how she could not enjoy normal daily activities like a simple walk outside or a trip to the beach.

They also wrote about the greatest summer of her life when she was given the SCENESSE. Since

the trials have a few months before completion and the data assessed, the attendees asked the FDA

to approve the treatment quickly. Once again, without treatment, Monica and other EPP people are left to “fry” in the summer sun. The letters were all compelling. The Fleegel family has five siblings

who have EPP, Monica, Theresa, Bill, Rita and Tom and all but one were on the clinical trials and all

are in the Longitudinal Study. We sincerely appreciate the Fleegel family and all of Monica’s family

and friends who participated in this awareness and fundraising event. And thanks To Monica’s

daughter Addie, who made the APF cookie. Yum!!! Photo L to R Addie, Monica, sis-in-law Kathleen, brothers Pat and Tom.

Victoria Harrold "I am 28 years old and live in England. I was finally diagnosed with EPP at the age of 24

after a long struggle. Because of my own difficulty getting diagnosed, I now want to help raise awareness for this condition and encourage those who suffer in silence to fight to get someone to listen to them. My childhood in the spring/summer seasons was not a happy one. School was awful for me, because I was burning and no one believed me, and my skin was so scabby, the kids at school called me monkey, gremlin, alien etc. Even when my face was so swollen that my lip pushed up my nose and my knuckles disappeared when my hands were swollen and my feet were so swollen I needed a wheelchair, the doctors still continued

to misdiagnose me. Doctors said I was attention seeking and put me on anti-depressants to cope. After years and years of misdiagnosis and hospitalizations, a new dermatologist who tested me for EPP solved the mystery."

!Jessica Hawkins Ivey helped with Awareness Week and our letter writing campaign to

the FDA. Jessica participated in Phase II, the first round of clinical trials, and was very helpful

to those who participated in the Phase III trials by sharing her experience. She also amassed

a large number of letters for the FDA. Jessica has her Master’s in Nursing and has worked in

neurosurgery, orthopedics and nursing informatics. She now is the Nursing Clinical Manager in the perioperative division at a Midland, Texas hospital. Despite her busy schedule and long

hours, she flew back and forth from her Midland home to the 'Galveston Porphyria Center' for

the clinical trials. Jessica, thanks for all you have done for the APF and to move a new treat-

ment forward for all EPP friends. (Some of the above members have a full story on the APF website.)!

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Protect our Future Health*Promote the training of 20 future porphyria experts throughthe APF Protect the Future program.

Physician and Patient Education*Maintain and expand award winning comprehensivewebsite, brochures, pamphlets, books and educationalmaterials for each type of porphyria, genetics, andresearch,

*Initiate and develop new educational programs andservices for purposes of research, treatment, diagnosis,

*Distribute materials on porphyria treatment,*Provide updated Safe and Unsafe drug lists,*Facilitate referral and consultation services for patients andphysicians.

*Support porphyria outreach clinics around the county*Produce and distribute updated Emergency Room, PrimaryCare Physician Guidelines, and assist the doctors,

*Produce ER Kits for Acute/EPP Porphyrias,*Create, publish and distribute the quarterly APF newsletterand Internet E-News,

*Develop additional educational programs for physicians andpatients to introduce new treatments and/or diagnostictechniques,

*Host physician and patient education conference calls withexperts,

*Produce and distribute professional DVD on porphyria; inNYC, Galveston and Houston with renowned experts,

*Provide national and international resources for patient andphysician education,

*Maintain exhibits at targeted medical conventions anddistribute educational materials,

*Facilitate telephone and internet contact between primarycare doctors and experts,

*Promote porphyria CME courses, grand rounds, etc.Awareness Activities

*Promote National Porphyria Awareness Week,*Devise and expedite PR campaigns to enhance porphyriaawareness and nationally and internationally

*Solicit and facilitate print media, major television series,medical and news programs. Thus far, the APF has gainedMORE television attention than ANY rare disease.

Research*Develop and distribute news updates for all porphyrias,*Locate patient volunteers for research and facilitate theirinvolvement,

*Advise physicians of ongoing and new research projects,*Assist with major research projects and needs,*Facilitate patient committee meetings,

*Facilitate the APF Global Partners Program,*Facilitate clinical trials,*Develop and distribute materials to help patientsunderstand research,

*Procure and increase government funding for research,*Assist with clinical trials and FDA approval,*Assist with FDA, Office of Rare Disease, NIH, and othergovernment agency issues,

*Assist in determining porphyria incidence,*Organize fundraising activities for research,*Support research financially.

Support and Assistance Programs*Maintain our Telephone Hotline, assisting patientsnationally and internationally.

*Facilitate financial assistance programs for insurance aid,*Answer website, mail, email and telephone questions,*Facilitate and maintain the IN TOUCH, FACEBOOK, Twitter,Blog and other support group network and services,

*Host programs for caretakers training and support,*Expedite patient diagnosis, support, testing and treatmentproblems,

*Facilitate appointments and physician consultations withporphyria experts,

*Help facilitate testing, diagnostic and treatment processwhen needed,

*Assist with Medicare and Medicaid issues,*Assist patients with their needs and support.*Facilitate assistance programs to fund treatment.

Social Networking Programs*Host five FACEBOOK social networking groups for each typeof porphyria and Purple Light Blog and Twitter accounts,

*Assist Veterans with PCT/Agent Orange issues,*Host Patient and family gatherings and educationalpresentations,

*Provide Pen Pal services for youngsters.*Provide FACEBOOK groups for young adults with EPP.*Produce new books, pamphlets and other educationalmaterials for each type of porphyria,

*Increase porphyria awareness around the world,*Procure government research funding,*Develop and distribute educational materials for patientsand physicians,

*Develop and distribute Emergency Room Kits andEmergency Room Guidelines,

*Prepare and Update educational materials and website,*Assist researchers to locate research volunteers,*Assist patients to find reimbursement for health relatedexpenses.

Porphyria Awareness Week provided the opportunity for all APF members to enhance Porphyria

Awareness within their own communities and medical professionals. We appreciate the hundreds of our members

who participated and thank them for their Awareness projects. Below are just a few stories of the APF members

who hosted Awareness events—starting with kids and their parents.

Cook Brothers The Cook brothers, Cason (11) and Caul (10), have started a Porphyria Awareness Week HAT

DAY tradition in their home town of Vernon, Texas. Both brothers have EPP and have set a great example on how

to enhance porphyria awareness in their own local area. The boys wanted to raise money for the APF, too, so they

asked the school board if they could do an awareness event and raise funds for the APF by hosting HAT DAY at

which everyone at their schools who wanted to participate could wear a hat in honor of

the brothers and would bring in one dollar for the APF. The students loved the idea. It

also gave Cason and Caul a chance to teach their schoolmates about porphy-

ria, especially EPP. The boys explained about not being able to be in the sun and how

it affects them, thus giving their friends a greater understanding of the severity and

complexity of EPP. Those kids who had taken part in the event last year were eager to

be a part of the event this year. They brought their dollars and wore their hats and

made the event extra fun, educational and great for the APF. Also, employees at many

businesses could do the same by bringing a dollar and wearing a hat every day of Porphyria Awareness Week. Their

whole community got involved and businesses even contributed by giving discounts to their customers. The Cook

family also hosted another successful fundraising and awareness events at their church. This was such a wonderful

and fun way to promote awareness and raise funds for physician education.

One of the most poignant notes was when the boys discovered a verse in the Bible they called their own, “The Lord is like a shade tree at your right hand, the sun will not harm you by day nor the moon by night.”

Alessia Callahan, who is a 5th grader from Greensboro, NJ, chose to make a presentation for her school as

her National Porphyria Awareness Week contribution. Alessia has EPP and takes

enlightening the public on the porphyria, particularly her type, EPP, very seriously.

Like the Cook brothers, she may be young but she has made a powerful impact on

porphyria awareness in her community and school. She has educated her school for

several years now by explaining the disease and sharing her own story with the

students. To answer what EPP feels like, Alessia told her classmates, “It feels hot - like there are needles going into my skin, and it takes a long time for that to go away.” While Alessia and her family embrace National Porphyria Awareness Week

as an opportunity to share their story, their open approach continues throughout the year. “Our family tries to get the word out as much as possible since her disease is not always visible,” said Janeen, Alessia’s mother. Both

Janeen and Tim are diligent to spread the word about porphyria. We thank the entire Callahan family. Their local

news printed an outstanding article about Allesia’s effort and EPP. Read the article in the Glassboro Schools' news: http://www.glassboroschools.us/site/default.aspx?PageType=3&ModuleInstanceID=767&ViewID=047E6BE3-6D87-4130-8424-D8E4E9ED6C2A&RenderLoc=0&FlexDataID=6698&PageID=1

Pierre Mouledoux is also a longstanding APF member who has been very active in advancing EPP treatment

and awareness. In fact, Pierre was one of the volunteers, who participated in the clinical trials

to secure FDA approval for Afamelanotide, now named SCENESSE, which is an implant devel-

oped by Clinuvel Pharmaceutical. Pierre, like others, feels his time on the drug was the best,

most pain free summer of his life. Pierre is so anxious to receive FDA approval of the drug

that he has encouraged other EPP patients and his family to write the FDA on behalf of the

treatment. Pierre has also volunteered to travel to Washington with Desiree/APF to represent

EPP patients at a meeting with the FDA. Pierre will be sharing his own experience with EPP

and how life was for him when he could finally have a normal life in the sun. Pierre has also

been a great encourager and friendly touch on Facebook among other people with EPP. He has also launched a

campaign in Louisiana to confront their new laws that require fingerprinting and other rights that should not be vio-

lated just to get his windows tinted for EPP. Dave McCrae launched a similar campaign in the state of Washington

to secure handicap parking when needed and won. We support and thank you, Pierre. See you in Washington DC!

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