International FOP Association, Inc.

Our vision is a cure for FOP, accessible worldwide. Our goals describe our plan to achieve our mission and vision.

Goal I: Catalyze the highest-quality research on FOP to drive towards treatment and a cure by funding research, developing a research infrastructure, and promoting research connections

Goal II: Serve as a trusted resource to people with FOP and their families by providing flexible and tailored support and connections through all stages of life with FOP

Goal III: Enable informed decision-making about treatment and research participation by the community of people with FOP

Goal IV: Equip FOP organizations based outside of the US to serve individuals with FOP and their families in their respective geographic areas

Goal V: Serve as a voice for people with FOP and families by building targeted awareness and providing targeted advocacy

Goal VI: Equip Board of Directors to provide strategic leadership for implementation of the strategic plan, rather than day-to-day operational support

Goal VII: Develop and implement an updated staff structure to support implementation of strategic planning goals in line with the IFOPA’s mission

Goal VIII: Develop a diversified, sustainable and growing fundraising program to sustain the IFOPA in the short- and long-term

The IFOPA invests the majority of our income (60%) in research to increase scientific understanding of FOP and fund research to develop treatments and, one day, a cure. The IFOPA not only directly funds research, but builds research infrastructure to facilitate research. Today, and even when treatments are developed and approved, there is a need to educate and support families living with a debilitating, chronic disease; this work is 18% of our budget. While some programs focus on disease management and education and support on clinical studies and trials, the IFOPA has built programs to increase emotional health, not just of the patient, but the whole family, as well as to equip those living with disabilities to live more independently. The IFOPA uses a variety of strategies to support our work - supporting families in their fundraising efforts; IFOPA-led campaigns on Rare Disease Day, FOP Awareness Day, #GivingTuesday, and at year-end; the Focus on Possibilities Monthly Giving Program; Cars2CureFOP; Facebook fundraising; major gifts; and event and program sponsorship from industry partners.

The IFOPA provides the majority of its programs and services virtually to FOP patients and families, as well as physicians and researchers, around the world. As such, the IFOPA does not have a formal office, but storage space in North Kansas City, MO. The IFOPA employs an efficient and effective staff who each work remotely from their homes. Governance is provided by an elected, volunteer board of directors of nine to 15 members drawn from the USA and abroad. The Board is primarily comprised of patients and family members. The IFOPA has a robust volunteer committee structure which includes the following committees: Executive, Finance, Audit, Board Development & Nominating, Research, Fund Development, Family Services, Advocacy & Awareness, and the International President's Council. The IFOPA provides a comprehensive website that can be translated into any language and includes a wide range of information on FOP research, disease management, clinical studies and trials, and patient and family support. To connect the FOP community, the IFOPA also manages robust social media networks, including Facebook, Twitter, LinkedIn, Pinterest, Instagram and YouTube.

In its 30 year existence, the IFOPA has donated over $11 million in FOP research grants, and currently donates nearly $900,000 in research grants annually. We are proud that 78 cents of very dollar funds programs and services. In the beginning the IFOPA only funded basic research; now we fund basic and translational research and we will continue to build out our research infrastructure programs. In the last year the IFOPA has expanded our family education and support programs to include emotional support and independent living. These programs will continue to expand in the US and worldwide. There are currently three active worldwide FOP clinical trials with several more expected to launch in the next year. The IFOPA will be developing more resources to educate patients and families about drug development and clinical trials so that clinical trials are able to progress. As potential drug treatments go before the FDA the IFOPA will ensure the patient voice is heard. The IFOPA is eager to launch our awareness campaign for the pediatric health care community this year so that patients can be diagnosed earlier, connected to FOP experts and appropriate medical care, and that activities that could cause the disease to advance more rapidly are avoided. The financial support of our individual and corporate donors continues to grow and we are grateful for their belief in our vision and mission and their support of our annual activities.