Personal Reflections on 25th Anniversary of the IFOPA

Today, April 23, 2013, we celebrate International FOP Awareness Day. On this date each year we commemorate the discovery of the gene mutation that causes FOP. This discovery was made in 2006 at the FOP Research Laboratory at the University of Pennsylvania, led by Dr. Fred Kaplan and Dr. Eileen Shore. The IFOPA has had many milestones from our humble beginnings as a small grassroots non-profit with 11 members to the foremost organization for FOP, ours has been an incredible journey. Together, we as a community have built the IFOPA to what it is today - an achievement that we can all be proud of.

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This year we are celebrating the 25th anniversary of the IFOPA. My personal journey began with meeting Dr. Michael Zasloff, a meeting that turned my world upside down and led me to create the International FOP Association. We've evolved from a pen pal group to the world's leading non-profit dedicated to funding research, providing support to members and families, raising awareness and promoting advocacy for the rare and orphan condition Fibrodysplasia Ossificans Progressiva (FOP).jeanniedoctors1

As I reflect over the incredible growth of our organization since 1988, my mind is flooded with wonderful memories and the incredible friendships that I have made over the years. Because of FOP, we have a 1in 2 million chance that our lives would cross each other's path and yet what an extraordinary gift I have that you are a part of my life. Our FOP community, family, friends, donors and volunteers have an unwavering dedication and focus to find a treatment and cure for FOP. Together they help create this unique organization's circle of friends. Our IFOPA staff has also done an incredible job with the bumps in the road, always committed to our mission.

Throughout all of the fundraisers, family gatherings, symposiums, scientific meetings, IFOPA board of directors meetings and the multitude of other activities that comprise 25 years of organizational history, one unified purpose has persevered – to raise funding for FOP research to find a treatment and a cure.

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Many programs have also been initiated over the years; LIFE Awards, Traveling Resource Center, International President's Council, Medical Binders and Emergency Tools for FOP Members and the Jeannie Peeper Awards to name a few. All of our programs are impacting lives and our Jeannie Peeper Awards are promoting incredible individuals' work within the FOP Community.

Our journey is not complete yet, but it sure has been an amazing 25 year ride. After more than 20 years of focused research at the FOP Research Laboratory at the University of Pennsylvania, and the vigorous efforts led by Dr. Fred Kaplan and Dr. Eileen Shore, who have devoted their professional life's work to our cause - we move forward! This dedicated research team also includes principal investigators, post-doctoral fellows, scientists, students and staff. Now a global effort, we are in the era of clinical trials. More efficacy work remains with specific treatment compounds, but we are confidently awaiting this milestone. We are so grateful to Drs. Kaplan and Shore and everyone who is working on our behalf.

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Thank you to our wonderful families who have steadfastly generated the necessary funding to support research and IFOPA programs over the years. A remarkable $15.7 million have been raised since our first fundraiser. For 25 years we have been committed to our grassroots fundraising efforts. Thank you to the hundreds of volunteers who have devoted countless hours to advancing our work.

The spirit and support of the FOP family is unwavering. Our hopes are high that we will indeed reach our goal of finding an effective treatment and eventual cure for FOP.

With Much Love and Gratitude,
Jeannie L. Peeper
President and Founder