Making an impact through research, education, support and advocacy
The IFOPA provides many programs and services to patients, families and the FOP community.
Research
- More than $500,000 is given to the Center for Research in FOP and Related Disorders at the University of Pennsylvania School of Medicine each year.
- Instrumental scientific research studies are administered on FOP patients facing additional afflictions.
- The FOP Registry is a global, voluntary database that collects and reports demographics, disease and quality-of-life information directly from individuals with FOP twice a year via a secure, web-based tool.
- The ACT (Accelerating Cures & Treatments) for FOP Grant Program provides, through a competitive application process, research funding to scientists conducting research on Fibrodysplasia ossificans progressiva (FOP).
- The Tooth Ferry Program at UPenn collects baby teeth as children lose them to study as a model for how FOP functions at a cellular level. Children with FOP, as well as siblings and non-family members, are welcome to participate.
Education
-
Education is provided to the medical community on early signs of FOP.
-
Various publications and other media about FOP, clinical trials and issues surrounding those diagnosed with FOP are distributed via the IFOPA website.
- A collection of videos highlighting various aspects of FOP are available on the IFOPA website, as well as the IFOPA YouTube channel.
- The IFOPA hosts regional events, such as the Midwest Family Gathering, to bring together families with FOP and clinicians in the field for a weekend of learning and networking.
- The Resilient Living Program provides education for strengthening the mind and spirit as every family works to overcome the challenges they face throughout their journey with FOP.
- The Ability Toolbox Program is designed to empower individuals with FOP by promoting independence through the use of tools and home adaptations.
- Take part in The Advocacy Series to explore ways to become a more effective communicator and problem solver to get your needs met in a variety of settings.
- Learn about the importance of oral health care and it's impact on the person's overall well-being.
Support
- The FOP Connection is a monthly eNewsletter featuring articles and photos about FOP research, resources, fundraising, and the FOP community.
- Online Support Groups allow individuals living with FOP and/ or their parents to connect with one another in a safe environment. These groups are used to ask questions and get advice, share concerns, provide practical suggestions for everyday life and situations that may arise, and simply be connected to others with FOP. These groups are generally administered by FOP individuals or, in the case of Parents with FOPers, by a parent of a child with FOP.
- The Harold & Elaine Kaplan Quality of L.I.F.E. (Living Independently with Full Equality) Awards are granted to patients with FOP. The program is designed to promote health, welfare and independence. Examples of awards range from adaptive equipment, walkers, wheelchairs, adaptive bed, vehicle adaptation, tuition/registration for vocational training, specialized bicycles, computer hardware or assistive technology and reading aids. Click L.I.F.E. Award for guidelines and application.
- The FOP Connect: Peer Mentor Program is designed to provide constituents in the FOP community the opportunity to have mentors to better guide them through the challenges of FOP.
- Guidebooks written for families dealing with FOP are available online.
- Learn more about ABLE (Achieving a Better Life Experience) Accounts - tax-advantaged savings accounts for individuals with disabilities and their families. An ABLE account allows anyone to contribute (including the account holder) without the fear of saving too high of an amount and losing essential benefits that allow a person living with a disability to live independently.
- Learn more about medical cannabis — a valuable tool for managing chronic pain.
- Learn more about the transition to an adult health care provider and an taking an adult approach to managing one's care.
- Access the IFOPA's Zoom Resource or participate in one of our monthly social events to connect with other members of the community using an online video conferencing platform.
Advocacy
The IFOPA is an active member of:
