About the IFOPA's Founder
By Jeannie Peeper
Two roads diverged in a wood, and I-
I took the one less traveled by
And that has made all the difference
-- from A Road Not Taken by Robert Frost
I am Jeannie Peeper, and in 1962, at age four, I was diagnosed with Myositis (Fibrodysplasia) Ossificans Progressiva. There were very few medical articles available about this disease and the doctors gave my parents little hope for my future. I was the fourth child of five, and my parents were determined to provide a life for me that would be as normal as possible. I grew up in a Christian home, and our faith sustained us during some dark and difficult times. I was fortunate that my family and peers never treated me any differently. Looking back now as an adult, I am deeply grateful for this gift of being treated like everyone else.
Like my siblings, I attended public school through high school. I then went on to graduate from college with a BA degree in Social Work in 1985. Soon afterwards, my life was forever changed. Since I had been struggling with an FOP flare up in my hip, I was visiting many doctors. One of them told me about Dr. Michael Zasloff, a doctor who was doing research on my rare disease. I was absolutely stunned! I couldn't believe there was actually a doctor who knew something about my condition. I just had to go and see him.
Not long after that, my dream came true. I found myself lying on a hospital bed at the National Institutes of Health with my mother by my side and talking to Dr. Michael Zasloff. It was September 1987, and I hoped Dr. Zasloff would tell me that it was possible to have a hip replacement. Well, that hope was quickly shattered. But during our conversation, Dr. Zasloff talked about his research and the FOP patients he had seen throughout the years. I was mesmerized by his every word. How could it be that he knew 20 people with FOP? I had never even contemplated that there were others in the world like me. He put me in touch with Monica Anderson, one of the other FOP patients. She and I talked for a long time about everything under the sun. For the first time in my life, I was no longer alone.
I came home from that fateful trip with a list of names Dr. Zasloff had given me. Thus my mission began. I wrote to everyone. I had a million questions. I wanted to know everything about them - their childhood experiences, if they were affected the same way I was, did they know anyone else with FOP? I received 11 responses, including one from a Nancy Whitmore (now Sando), and we became fast friends. The isolation of the past was finally over. Soon afterwards, The FOP Connection newsletter was created to share the information I was gathering from others with FOP. This connecting of people with FOP, all sharing a common goal, sparked the need to incorporate a non-profit organization to raise funds for research. On June 8, 1988, the International FOP Association was born, and I have been honored to serve as President of this organization since its inception.
The first IFOPA fundraiser was held in 1989 and raised $200. Our first donation to research, made in April 1990, was $1,200. It was a small beginning, but a strong one. Nick Bogard, the father of a young man with FOP, organized the first large fundraiser for the IFOPA and FOP research. It was called The Jud Bogard Golf Tournament, in honor of his son Jud, and for several years this was the only IFOPA fundraising event. Each year, IFOPA fundraising has grown, and it continues today in this unique tradition of raising research dollars through the grassroots efforts of FOP families.
I still vividly remember my first meeting with Sandi Lee and Andy & Nancy Sando on a warm day in 1989. After living all these years without even imagining the existence of someone else like me, what would it be like, at age 29, to finally meet someone else with FOP? Would our bodies look the same? The comfort I felt in knowing that I was no longer alone in my struggle with FOP was a relief that I was not really expecting, but graciously accepted.
The first "official" FOP family meeting was held in Orlando, Florida in May 1991. Eight families attended, along with Dr. Kaplan, a soft-spoken man with a giant heart who has made FOP research his life's work. This was the first time I met Dr. Kaplan. Also attending was Dr. Randy Cohen, who at that time was a medical student working in the FOP laboratory. In between visiting theme parks, the families compared notes on our lives and began to feel the closeness of dear friends with a long history. At the end of our brief time together, we all hugged goodbye, and many of us wept with the emotion of what that weekend meant to us.
To date, the IFOPA has held four FOP family meetings in Orlando. The second was in May 1994, attended by 21 FOP families from around the world and our research team, Drs. Kaplan, Zasloff and Eileen Shore. We had a wonderful time sharing our life experiences and socializing, while the doctors obtained important research data. The third event was in April 1997, attended by 35 FOP families. By now, newly diagnosed FOP patients were able to connect immediately with others who had FOP. What an incredible feeling! Then in April 2003, twenty-eight FOP families attended the fourth family meeting with Dr. Kaplan, Dr. Shore, Dr. David Glaser (the FOP Fellow), and Dr. Hebela Nadar.
The entire FOP community is very grateful to this extraordinary research team. They are led by Dr. Kaplan, but their devotion and zeal comes from the compassion in their individual hearts. Finding a cure for FOP is their mission, and they are deeply committed to the people depending on the success of their work.
Involving the Scientific Community
The First International Symposium on FOP in September 1991 was organized to meet the need for an international meeting of physicians and scientists to discuss the issues of FOP. This meeting in Philadelphia, Pennsylvania was funded with proceeds from the Jud Bogard Golf Tournament. Thirty physicians and scientists were invited to attend; the IFOPA was honored to host Prof. Michael Connor, Dr. Victor McKusick and Dr. William Gelbart, to name a few. Pictured to the right are Dr. Zasloff, myself and Dr. Kaplan at the symposium. The symposium brought great medical minds together to discuss FOP research and gave 20 families an opportunity to meet each other. At the time, this was the largest gathering of people with FOP ever. By the end of that symposium, official "war" had been declared on FOP.
In 1992, the FOP Molecular Biology Laboratory at the University of Pennsylvania was established, and Eileen Shore, Ph.D. was hired to direct lab operations. Previous FOP laboratory space had been provided by the Children's Hospital of Philadelphia: Now we had our own lab. Ashley Kurpiel's drawing, "Save the FOP Children", which had appeared on the front cover of The First International FOP Symposium program book, was proudly hung over the doorway.
By October 1995, when the Second International Symposium on FOP was held, the IFOPA had grown to proportions we never could have envisioned in 1988. There was even greater interest in the work of Drs. Kaplan, Zasloff, and Shore as news of their experiments and discoveries reached the scientific community. The response to this symposium was overwhelming, with 75 physicians and scientists attending, as well as 40 families from all over the world.
The Third International Symposium was held in November 2000, when an incredible host of doctors, scientists and researchers from around the globe gathered to share their knowledge and brainstorm about FOP research. This event has been our greatest achievement to date, bringing together 85 FOP families from more than 12 countries. For many families, this was their first opportunity to interact with other people with FOP. The joy, excitement and comfort we experience when meeting another family dealing with FOP is extraordinary!
With each meeting and each achievement, the momentum and jubilation builds within the FOP community. The IFOPA has continued to grow over the years, reaching new heights and finding more than 300 FOP patients in more than forty countries. We are now focusing our energies on finding FOP families containing more than one generation afflicted with the condition. These "multi-generational families" are our greatest hope for finding the gene that causes FOP and a cure to stop it.
My Personal Message
Knowing other people with FOP and their families, Drs. Zasloff, Kaplan, Shore, Glaser and other members of the research team has greatly enriched my life. I am passionate about helping others cope with FOP and about educating families, doctors and the public about this disease. I would like especially to thank my mom, Marie Peeper, for her love, guidance and perseverance. She has worked alongside me all the way. I would also like to thank my devoted friend, Robert Anderson, my foundation through thick and thin. I could not have done it without them.
The IFOPA's goals could not be accomplished without the help of several remarkable groups of people: our wonderful volunteers who graciously give their time and talents, the FOP families who actively fundraise, our extraordinarily dedicated research team, and the small IFOPA staff who all work so hard and care so much. Together, we are an incredible team. We hope that you will join us in our mission to find a treatment and a cure for FOP.