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Showing posts from January, 2014

New Orleans Marathon~Rock 'n' Roll Race Day For EPP Disease! 2/2/2014 Training buddies: Polly Barton Harvard Family & Friends.

New Orleans Marathon~Rock 'n' Roll Race Day For EPP Disease!
2/2/2014 Training buddies: Polly Barton Harvard Family & Friends. 

APF member, Polly Barton Harvard is running for EPP.  Join me, Desiree Lyon Howe, in participating in her event.  
Here is what Polly has to say about running the marathon and why.
I will be raising awareness for my wonderful daughter who has EPP.
I hope family and friends and others interested in porphyria will take a few minutes to donate, because it goes to the Protect the Future program to train young doctors as future porphyria experts.
Many thanks for your support and don't forget to forward this to anyone who might want to donate, too.  Everyone is invited to participate in this wonderful cause.  Please sign up today or contact to the American Porphyria Foundation.  866.apf.3635
Donating through this website is simple, fast and totally secure.  You can donate any amount you want on my FirstGiving site.…


My name is Amy Chapman I work along with the APF we are currently looking for patient volunteers that have Porphyria and willing to do research, if you would like to reach out to me by email it’s very simple and short to get you enrolled.  Here is some information about it below, there is a limited time to sign up by Jan 30, 2014.  We need patient volunteers of all types to join these studies below make an appointment with me today.  Take 10-15 minutes and know your date of diagnosis, a few short questions and know that your sharing in a wonderful work!
Please email me!
The RDCRN Patient Contact Registry is a method by which patients with rare diseases can register themselves with the RDCRN in order to be contacted in the future about clinical research opportunities and updates on the progress of the research projects. The contact registry is anonymous and free of charge. You (or your child) are invited to participate in a research project that will develop a nation-wid…

Just one of them days....

Have you ever had one of these DAYS?.........Your not alone, please take some time for yourself, to rest, relax, enjoy a special moment or just do nothing at all, we have a wonderful family to share our thoughts and ideas know that we care for each and everyone of YOU!

"Remember.....Research is the key to your cure!"

What Do Interior Designers The APF & Protect the Future Program all have in common?

Do we have any interior designers who are members of the APF? 
NO!   We are not redecorating our office, rather, we have a wonderful opportunity to gain support for the Protect the Future Program to train future porphyria experts that involves interior designers.
Therefore, if you are an interior designer, please contact Desiree Lyon Howe at the APF:  866.APF.3535.

"Remember.....Research is the key to your cure!"

Research Studies

Amber Peacock and her goal to raise funds for White Dental Veneers she has CEP

White Dental Veneers Raised: $0.00 Goal: $12,000.00
Created by Amber Peacock 456 Friends ContactEmbed

Mobile App! Acute Porphyrias
Drug Safety S Very likely to be safe for prolonged use by individuals with an acute porphyria, based on consistent evidence. PS Probably safe for prolonged use by individuals with an acute porphyria, based on evidence that is either inconsistent or insufficient to be conclusive. PU Probably unsafe for prolonged use by individuals with an acute porphyria, based on evidence that is either inconsistent or insufficient to be conclusive. U Very likely to be unsafe for prolonged use by individuals with an acute porphyria, based on consistent evidence. Search Tips The same drug may appear in more than one database, so you may see repeated results and, in some cases, the drug's safety may be different. Please be careful in these cases, the decision to use such a drug or not depends on your level of confidence in the database. If a drug is not listed in any of the databases consider it unsafe. Type any part of the generic drug name, the brand name, the drug classificat…

Public service message and the story of Megan Railing with AIP

Were are in need of AIP Patients with Frequent monthly attacks for a research project.  To get enrolled in a study please contact me, why not explore great health options, participating in research not only benefits you but for all one day finding a cure.  If you have questions please ask were here to listen and help YOU.
Enjoy this story.
Megan Railing Type of Porphyria:  Acute Intermittent Porphyria (AIP) Megan’s story is an inspirational one of a mother’s love for her daughter. Denise Railling’s account of Megan’s courageous battle to live is a moving example for us all. Megan was a typical healthy teenager, participating in marching band, swim team, babysitting, and living a great life until the summer of her sixteenth year. For no explainable reason, she became quite ill with persistent vomiting, abdominal symptoms, bowel dysfunction and major thirty pound weight loss in six weeks. We made multiple visits to the ER where she was given fluid and morphine and sent ho…

Patient Meeting Information sign up with Yvette Today!

"Remember.....Research is the key to your cure"

My Life with EPP as told by James Beadles

James Beadles

Type of Porphyria:  Erythropoietic Protoporphyria (EPP) I live life with EPP! I was diagnosed when I was six by a dermatologist named Carl Anderson who has since passed away. Up until my diagnosis, my parents had heard it all from a number of doctors. I was allergic to a medicine, or I was allergic to weed killer, to simply saying, "it is just a rash." All the while, I would scream in pain. My parents would help by placing cool clothes on me. I live in sunny southern California in a beach town. All my friends were into surfing and sailing. The outdoors is part of life in SoCal. I did not let my EPP stop me from enjoying the outdoors— though sometimes I paid dearly. I played baseball until high school. I learned to sail. I ran in triathlons and half-marathons. I snow skied and water-skied. I played golf. All the time I endured the funny looks and mean things said about the way I looked and had to dress. I did not let it stop me. Sure, it bothered me when I was y…

Start your health off Right!

Start your health off right! How you may ask?
If you have not joined the below please contact me at to take a few moments to register its that simple, secure and we need your help. Why is my Participation Important?
Maintaining the Relationship Between Patients and Researchers is Vital!
The Contact Registry has been created to inform patients and/or parents of patients of clinical research studies. Joining the contact registry will help researchers identify and recruit patients who are eligible for participation in future research studies.
Information contained within this registry will be used for recruitment to research studies directed at improving our knowledge and treatment of these rare diseases. The continued efforts of researchers seek to improve the quality of life for all who are suffering from these rare diseases. The work of the researchers cannot occur without the partnership with patients.
Patients who participate in research make it possible for researchers…

Join the studies are you registered?

Now is the time to join the many other people who are helping porphyria researchers find new treatments leading to a cure.
In most research studies, you will not be asked to take an experimental drug, rather, you will be asked to contribute your blood , DNA and/or urine and answer pertinent questions.
Please see the list and parameters below and contact Desiree at the APF if you are interested or have questions. You will be placed in direct contact with the research team:
To be eligible for the Longitudinal Study of the Porphyrias: Must have a confirmed diagnosis of one of the porphyriaIt is preferable if patients are able to come to a participating center to be clinically evaluated (through insurance if possible)If patients cannot come to a center they can be seen by a local physician and have their records sent to a participating center along with the necessary samples (DNA, porphyria labs, etc)

To participate in the following studies the patient MUST already be in the Longitudinal Study…