Information for Donors

 

The International FOP Association (IFOPA) is a 501 (c ) (3) non-profit organization that funds research to find a cure for the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP) while supporting individuals and their families through education, public awareness and advocacy. FOP is one of the rarest, most disabling genetic conditions known to medicine; it causes bone to form in muscles, tendons, ligaments, and joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.

The IFOPA was founded in 1988 by a young woman with FOP named Jeannie Peeper who had never met anyone else with FOP. This isolation was typical before the IFOPA was formed. Today Jeannie’s goal to bring people with FOP together has been realized and exceeded. The IFOPA is the umbrella organization for people with FOP all over the world and the place to come for education and support plus it provides over $500,000 annually to the FOP Research Program at the University of Pennsylvania.

My family joined the IFOPA in 2009 with the diagnosis of my grandson, Lincoln Wheelock of Des Moines, IA. Now six, Lincoln is overall doing well but has started to show the early affects of the condition. Today I serve as the IFOPA’s board chairman, and thank the many families and friends of the IFOPA who have supported our cause over the years. Researchers are moving closer toward a treatment, working with compounds that have the potential to halt the runaway growth of extra bone in FOP patients. Following final testing, the next step is a clinical trial. FOP families anxiously await this exciting development.

On behalf of the IFOPA Board of Directors and our President and Founder, Jeannie Peeper, I encourage your continued involvement and support. Please review our financial, programmatic and special event information contained on our website. Together, we can find an effective treatment and eventual cure.

Sincerely,

Mark Gambaiana

IFOPA Board Chairman
Term 2012-2013

 

To view the IFOPA's Financial Information, click here.