Learn how your support of the IFOPA helps families around the world

The IFOPA’s commitment to the international FOP community is clear in both our vision and mission statements.

Our Vision
A cure for FOP, accessible worldwide.

Our 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. 

As part of that commitment, the IFOPA offers a grant program to support family meetings organized by members of the International President’s Council. This year we were pleased to support family meetings in both Germany and Russia. Congratulations to the meeting organizers – Ralf Fischer in Germany and Anna Balyaeva in Russia – who led incredible teams of volunteers (too many to name) and delivered excellent meetings where learning, connecting and supporting one another were key priorities.  

The IFOPA's support wasn't just financial. Michelle Davis, Executive Director, traveled to both meetings to bring IFOPA-led programs directly to nearly 50 families. The added bonus was educating local physicians and researchers about these important programs offered by the IFOPA.    

The FOP Registry is the largest and most in-depth database of clinical and medical information about FOP and those who are living with the disease. It can only grow with contributions from people living with FOP and their physicians. In 2017, the IFOPA made the investment and had the FOP Registry translated into French, German, Italian, Portuguese, Russian and Spanish so that more patients from around the world would be able to participate.

The IFOPA jumped on the opportunity to attend the German and Russian meetings and talk with families directly about the FOP Registry. Michelle shared why their participation is critical and how to enroll and complete the 6-month follow-up surveys. A new FOP Registry brochure is now available and the IFOPA went the extra step and had the brochure translated into German and Russian for the meetings. Check out the new FOP Registry brochure below – more translations are on the way!

You’ve probably heard about Resource Connect: Everyday Tools for Independent Living. This important new program at the IFOPA helps those with FOP build independence, even with small tasks, which adds to the health and well-being of the person with FOP and their caregivers. Through Resource Connect families can:

• Identify physical limitations (whether old or new)
• Learn about tools, devices or adaptations that others living with FOP have found useful
• Purchase, adapt or build tools that could help solve the limitation

A critical part of the Resource Connect program is showing the tools to families and demonstrating and discussing their use. Michelle packed up suitcases of tools and took them to the German and Russian meetings where, with the help of incredible translators, she connected with patients and families. One of the favorite moments was when Gilles Keller used a dressing stick to open a window. Tools help with tasks from eating and cooking to toileting and bathing to dressing, and can assist with everyday tasks (like opening a window or car door) or help in the school and workplace.

Currently, the best way to access Resource Connect tools is through Pinterest, but we will soon be building an online resource guide that you can access even without a Pinterest account. For families needing financial assistance to support tools, equipment or adaptations they learn about in the Resource Connect: Everyday Tools for Independent Living program, Michelle shared how FOP'ers may be able to use the $1,500 USD grant provided by the Elaine and Harold Kaplan Quality of L.I.F.E. Awards. 

We are very grateful to the Radiant Hope Foundation for leading the work to bring Resource Connect to patients and families through a generous three-year grant.

The support of our amazing fundraisers and generous donors helps the IFOPA support these international meetings and bring them the latest in IFOPA programs and services. Thank you for your making a difference around the world!

German FOP’ers gather for a group photo, Gilles opens a window using a dressing stick, Harry FaceTimes an FOP’er who couldn’t attend to share about the FOP Registry, Members of FOP eV (Germany) discuss how to increase awareness of FOP.

Russian meeting organizer Anna with doctors attending from Russia and Germany, Olesya shares how her skirt has a zipper, Attendees gather to look at Resource Connect tools,  Attendees of the Russian FOP Conference gather for a photo.