IFOPA: International Fibrodysplasia Ossificans Progressiva Association. (organizational spotlight).
Children with FOP appear normal at birth, except for a congenital malformation of the great toe. Typically, during the first decade of life they form painful fibrous nodules over the neck, back and shoulders, which mature into bone in a process known as heterotopic ossification. FOP progresses along the trunk and limbs, replacing healthy muscles with normal-appearing bone. Any attempt to remove the extra bone, however, results in explosive new bone formation. People who have FOP experience different rates of new bone formation; in some the progression is rapid, in others more gradual. Often, by their mid-20s, people who have FOP are immobilized by an extra skeleton of FOP bone and use a wheelchair full-time.
In 1987, then-29-year-old Jeannie Peeper had never known of anyone else with FOP. She asked her doctor at the National Institutes of Health, Michael A. Zasloff, MD, PhD, for the names of other patients so she could correspond with someone else who had FOP. She was given 18 names, the complete list of living FOP patients known to the NIH. Jeannie composed a questionnaire asking for each person's date of diagnosis, hobbies, interests and a few other details. With eleven responses, she began a newsletter, the FOP Connection. The next year, 1988, the International FOP Association was incorporated, and has since expanded to a membership of 300 in 42 countries. Members and supporters raise and donate funds which allow the IFOPA to fund research at a major university and support a small office staff.
The International FOP Association has three missions:
* supporting medical research to find treatments and a cure for FOP;
* educating physicians, patients and the public;
* providing support to patients and their families.
In 1991, Dr. Zasloff and orthopedic surgeon Dr. Frederick S. Kaplan founded the FOP Molecular Biology Laboratory at the University of Pennsylvania School of Medicine. Research conducted, at the FOP Laboratory has yielded profound insights into bone formation and FOP; additionally, it may shed light on other bone-related conditions such as arthritis and osteoporosis. Funding sources include the National Institutes of Health, the Ian L. Cali Fund for FOP Research, the Stephen L. Roach/Whitney Weldon Fund, and the International FOP Association. FOP patients from all over the world over travel to the University of Pennsylvania for clinical visits with Dr. Kaplan and his colleagues. Researchers can access the FOP community through the IFOPA, which offers a patient population needed for research.
Rare disorders are often not recognized or correctly diagnosed, and it is not uncommon for people with FOP to be misdiagnosed and subjected to harmful surgery or chemotherapy. In 1985, for example, a prominent surgeon amputated the entire right arm and shoulder of a little girl whose condition he had misdiagnosed. The IFOPA works to disseminate information about FOP to doctors, patients, families, and the public.
A breakthrough came in February 1998 when an article about FOP, "A Few Hundred People Turned to Bone" by Thomas Maeder, appeared in The Atlantic Monthly. The next year, FOP was featured on television on ABC's 20/20 and in an hour-long segment, "The Skeleton Key", on the BBC's Horizons science program.
The Internet is a wonderful educational tool that has given anyone and everyone access to obscure medical information. Through the IFOPA website, http://www.ifopa.org, doctors can learn about FOP and patients can find each other. Parents of symptomatic but undiagnosed children have found information, which has led their doctors to a correct diagnosis of FOP.
With a condition as rare and debilitating as FOP, patients and their families feel terribly isolated. IFOPA'a third mission is to provide support to FOP patients and their families. The group continues to publish FOP Connection, the quarterly newsletter begun in 1987, as well as an abbreviated newsletter, Milestones, directed to donors.
A private e-mail group, foponline, allows instant electronic access to the FOP community. A South American mother of a young child with FOP appealed to the e-mail group for guidance to help her child through a painful flare-up, and community members responded with treatment suggestions and moral support. A 17-year-old wrote that she wants to move away from home to go to college and wondered how others schedule and pay for personal care attendants. Several FOP peers told how they find the accommodations and assistance they need to live on their own.
The IFOPA offers resources and consultation about assistive technology and funding sources through its L.I.F.E. Committee, Living Independently with Full Equality. IFOPA publications include What is FOP? A Guidebook for Families and What is FOP? Questions & Answers for the Children, both on the IFOPA website, and Overcoming Obstacles: A Catalogue of FOP Resources.
Three International FOP Symposia have been held in Philadelphia. The most recent, in 2000, was attended by 150 doctors and scientists and 94 persons with FOP and their families. For some it was a sweet reunion, while for others the Symposium provided their first opportunity to meet other people with FOP. Being together as a community feels like coming home. The bond of common experience and understanding is overwhelming. It's a glimpse of what heaven must be like, the place we are understood like nowhere else.
For more information, contact: International Fibrodysplasia Ossificans Progressiva Association (IFOPA)
Jeannie Peeper, President PO Box 196217 Winter Springs, FL 32719-6217 Phone: 407-365-4194 E-mail: email@example.com Website: http://www.ifopa.org
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|Publication:||The Exceptional Parent|
|Date:||Nov 1, 2002|
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