Reflections as we celebrate the IFOPA's 30th birthday
Thirty years ago, the IFOPA’s founders had a vision. The woman behind the creation of this vision was Jeannie Peeper and without her hard work and tenacity, the IFOPA would not be the organization it is today, three decades later.
“It is amazing to look back and see the many milestones we have reached over the years, the growth of the organization and the excitement of where we are with clinical trials,” Jeannie shares.
From a pen pal group to a successful and highly respected nonprofit organization, Jeannie built IFOPA from the ground up. The IFOPA was founded for three reasons. “To fund research for a treatment and a cure for FOP, to publish the FOP Connection newsletter to end the isolation for people with FOP, and to bring awareness of FOP,” explains Jeannie.
The first years as a new organization were difficult. The main obstacle was funding. “It was the FOP families who took the initiative to start fundraising in their local communities and today those grassroots efforts continue.”
A special place is held in Jeannie’s heart for all her IFOPA memories from the past 30 years, but one holds a significant meaning. “The FOP gene discovery was my most unforgettable moment, but meeting families from around the world has also been one of my favorite things.”
Jeannie understands facing the reality of FOP can be scary, but she has advice for parents of children with FOP. “Take life one day at a time, laugh often through your tears, give your child the opportunity to experience their childhood and most importantly, know that your child is a strong, resilient person who will persevere. They will teach everyone around them how amazing they truly are,” she says.
As each day passes, the original goal behind the formation of the IFOPA is getting closer to being reached. “Moving forward the organization will continue to support families in this journey, and together the answers to the mystery of FOP will be solved and a treatment will be discovered,” she says.
“Knowing our dream of finding a treatment for FOP will be a reality is exhilarating,” Jeannie concludes.