MISSION
To fund research to find a cure for FOP while supporting,
connecting and advocating for individuals with FOP and their families,
and raising awareness worldwide.
VISION
A cure for FOP, accessible worldwide.
ABOUT THE IFOPA
The International FOP Association (IFOPA) was founded in 1988 by Jeannie Peeper, a young woman with FOP who had never met anyone else with the disease. Jeannie knew others with FOP must be feeling the isolation she experienced, which led her and 10 other founding members to start a pen pal organization. In 1990, a FOP family held the IFOPA’s first fundraiser which then funded the IFOPA’s first research initiative — a fellowship at the University of Pennsylvania. Two traditions began that year – FOP families and friends raising funds to #cureFOP and the IFOPA devoting the majority of its budget to FOP research. Today, the IFOPA is a worldwide organization serving people with FOP, their families, researchers and clinicians worldwide.
THE IFOPA EXISTS TO
»Fund research to discover treatments and, one day, a cure for FOP that will be accessible worldwide
» Raise awareness of FOP to end misdiagnosis and ensure people with FOP receive proper medical care without delay
» Advocate for individuals with FOP who face the challenges of a life-long, progressive disease
» Educate and connect those newly diagnosed, along with their families and other caregivers
» Provide the FOP community access to the best possible FOP and disability resources & services
» Connect and support the FOP community around the world to end isolation for people living with FOP
WHEN YOU SUPPORT THE IFOPA, YOU SUPPORT
RESEARCH
FAMILY SERVICES
ADVOCACY & AWARENESSIFOPA STAFF
Meet the IFOPA Staff here.
THE IMPORTANT ROLE OF VOLUNTEERS
The IFOPA is overseen by a volunteer Board of Directors made up of patients, family members and community advocates. The IFOPA is also supported by active committees who play a critical role in achieving our mission.
» Ability Toolbox Ambassadors
» Advocacy & Awareness Committee
» Audit Committee*
» Board Development & Nominating Committee*
» Executive Committee*
»Family Services Committee
»Finance Committee*
»FOP Connect Peer Mentors
»Fundraising Committee*
»International President’s Council
»Jeannie Peeper Awards Committee
» Harold & Elaine Kaplan Quality of L.I.F.E. Awards Committee
» Research Committee*
* IFOPA Standing Committees
INTERNATIONAL PRESIDENT’S COUNCIL
The IFOPA’s International President’s Council (IPC), founded in 2007, is a network of volunteers who are committed to helping their national and regional FOP communities by supporting FOP families and keeping them connected and informed about treatments and research.
IPC leaders represent FOP families in:
GET INVOLVED TODAY
More than 80 cents of every dollar spent by the IFOPA is used to fulfill the IFOPA’s mission-critical work. The IFOPA is funded by the generosity of the community, both through personal donations and hosting community fundraising events. The support of private donors, foundations, corporate contributors, and the pharmaceutical industry give hope and empower the FOP community worldwide. Donors and fundraisers come from the United States and around the world.
Are you interested in organizing a fundraising event or online, email or letter-writing campaign?
You don’t have to do it alone!
The IFOPA’s Community Fundraising Manager Cathryn Roys is here to help. Contact Cathryn at
[email protected] or +1 (843) 709-3244.
