I (Stacey) am running in honor of my nephew Nathaniel who was diagnosed with FOP when he was three years old. This year he will turn 10!
Every week I will update the number of miles that I have run, and on May 15, 2014 (Nathaniel’s birthday), I will post the grand total. FYI It won’t be like 1,000 because I’m a beginner = )
Please consider making a per-mile pledge (one cent, a quarter, a dollar, etc.) or a flat donation to support the IFOPA. If you want to send a donation directly to the IFOPA, click DONATE and choose the Campaign “In Honor of Nathaniel Padilla” or if you prefer to mail a check, make check payable to the IFOPA and mail to IFOPA, P.O. Box 196217, Winter Springs, FL 32719. You can comment on the pledge page or be anonymous by e-mailing me at firstname.lastname@example.org and I can add your donation to the total. Even if you can only spare a few dollars, every little bit helps to support research and families.
3. Make your donation on May 15 at IFOPA.org – Campaign “In Honor of Nathaniel Padilla”
Thank you for your support!
What is Fibrodysplasia Ossificans Progressiva (FOP)?
One of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.
Demographics of FOP:
- Genetic disease affecting 1 in 2 million people
- No ethnic, racial, or gender patterns
- 800 confirmed cases across the globe
- 285 known cases in the United States
Finding a Cure and Treatment for FOP:
- Researchers at the University of Pennsylvania School of Medicine, the only laboratory in the US dedicated to FOP research, announced the Discovery of the FOP Gene in Nature Genetics in April 2006.
- 10,000 sq. ft. of shared research space in the Department of Orthopaedic Surgery
- 3 principal investigators with 15 post-doctoral fellows, students, scientists, and staff
- Funds spent on research – Approx. $1.5 million/year – 75% from FOP family fundraising and donations and 25% from institutional support (NIH/NIAMS, Orthopaedic Research and Education Foundation)
The International FOP Association (IFOPA) is a 501 (c ) (3) non-profit organization that funds research to find a cure for the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP) while supporting individuals and their families through education, public awareness and advocacy. FOP is one of the rarest, most disabling genetic conditions known to medicine; it causes bone to form in muscles, tendons, ligaments, and joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.
The IFOPA was founded in 1988 by a young woman with FOP named Jeannie Peeper who had never met anyone else with FOP. This isolation was typical before the IFOPA was formed. Today Jeannie’s goal to bring people with FOP together has been realized and exceeded. The IFOPA is the umbrella organization for people with FOP all over the world and the place to come for education and support plus it provides over $500,000 annually to the FOP Research Program at the University of Pennsylvania.
Please visit http://www.ifopa.org/ for more information