“Two roads diverged in a wood, and I — I took the one less traveled by, and that has made all the difference.” Robert Frost
Thirty-four years ago, following a fateful trip to the National Institute of Health and a visit with Dr. Michael Zasloff, my journey of hope began. It was there I learned I was not the only person diagnosed with the rare bone condition of fibrodysplasia ossificans progressiva (FOP). The power of desire and a voice was born, igniting the expedition to find others that have this rare condition.
In 1988, my vision to create the International FOP Association (IFOPA) became possible while working diligently alongside 10 other founding members. In 1989, Dr. Zasloff met Dr. Fred Kaplan - another fateful meeting - which fueled Dr. Kaplan’s life’s work unraveling the mysteries of FOP.
Fast forward 34 years later, and here we are united with approximately 1,000 confirmed cases of FOP individuals known globally and a team of phenomenal researchers and physicians. The IFOPA is now a mature organization that encompasses my founding dream to support families, fund research, and raise awareness on a global scale.
There have been many dedicated people since 1988 that have molded the foundation of today's success stories surrounding FOP. The IFOPA has provided the platform for growth, commitment, focus and community needed for the inclusion of families living in a world of uncertainty and rarity. All the while, it is the families and people with FOP, that have driven the story line, made the sacrifices, and funded the many milestones that have led us to today’s summit. It is the voices that have gathered as one, that have made a beautiful and unique melody.
My personal story is unique to me and yet all too familiar to the families of this community. Undoubtedly, we are bound by the fact that we each hold a common torch that shines bright for a treatment and a cure for FOP.
The FOP journey has been comprised of a multitude of fascinating and groundbreaking experiences including the FOP gene discovery, international symposiums, annual national and international family gatherings, Drug Development Forums, a scientific workshop, the International President’s Council, medical advisory groups, and we are incredibly grateful to now be involved in clinical trials. Over the years, the dedicated IFOPA Board of Directors and staff have worked diligently to move the organization forward and stay current with the ever-changing times. The tradition of gathering and working together to find the treatment for FOP continues today in a robust fashion.
It is my honor to be the Founder and to have served as the President of the IFOPA during an era where the first seeds of hope were planted and the world of a plausible treatment began to unfold. Today's footprint of the IFOPA leaves me in a place of everlasting gratitude to the people that have led us here, those who are in the fight today, and to those we have lost along the way.
Today, as President Emeritus, I continue to hold the torch for a treatment for this very special community I have called my family for 34 years.