Connecting the Global FOP Community for 10 Years
IPC leaders gather with The Traveling FOP Heart at the Drug Development Forum in Alghero, Sardinia, Italy in Oct. 2017. Find it on Instagram at #theFOPheart.
For ten years the International President’s Council (IPC) has brought together families across the world living with FOP to connect as a global community.
The IPC is made up of individuals living with FOP, parents, and clinicians. IPC representatives may run an FOP national organization or they have been asked by the leader of their national organization to serve in that role. In countries where there isn’t an FOP national organization, the IPC Steering Committee works to identify a person willing to connect and inform FOP families in their country.
IPC members share ideas and resources being used to support FOP families in their countries, while simultaneously building awareness and strengthening international collaboration on FOP research.
Amanda Cali, IFOPA Board Chair in 2005 and 2006, founded the International President’s Council. Amanda shares, “My vision in establishing the IPC in 2007 followed my deep belief that the international community and their voice needed to be brought to the forefront at the IFOPA, making the title of ‘international’ more of a reality. The work that members of the community had done on behalf of their countryman, at that point, was remarkable and needed to continue to develop and grow across all countries and communities. With the gene discovery only being a year earlier, the timing for such expansion was important for us all in order to find a treatment for FOP and to inform and participate in clinical trials.”
Dr. Patricia Delai, Brazil, served as the IPC’s first Chair, followed by Malcolm Munro, Canada, and Moira Liljesthröm, Argentina. Chris Bedford-Gay, United Kingdom, is the current IPC Chair.
The IPC meets in person annually at the Drug Development Forum or FOP Italia Meeting, and speak via web conference quarterly. The IPC was instrumental in facilitating the Flare-Up Survey which has been critical in FOP research and drug development. What does the IPC hope to accomplish in the next decade? Chris shares the IPC’s focus is growing clinical trial awareness and participation, encouraging FOP Registry enrollment, identifying representatives from countries not currently represented in the IPC which will help spread findings and information to more FOP families.
Chris says, “We’ve also recently turned our attention to adherence of specific guidelines when engaging pharmaceutical companies. This is vital because it allows the IFOPA to support the development of therapies meeting patient needs while preserving the IFOPA’s independence and ability to be an objective voice for people with FOP."
Michelle Davis, IFOPA Executive Director, shares, “Facilitating global connectivity and research participation is a key part of the IFOPA’s mission. The IPC is a dedicated network of patients, advocates, and clinicians who are instrumental in advancing this critical element of our mission."
We’re grateful to Amanda Cali for putting this vision of international connectivity and strength into motion, and to all of those who have volunteered their time and expertise as IPC chairs and representatives.