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Hayden was diagnosed with fibrodysplasia ossificans progressiva (FOP) on Sept 11, 2002. This genetic disease affects 1 in a million people. He was one of fewer than 1,000 people in the world diagnosed with FOP. His muscles slowly turned to bone, creating a second skeleton and rendering him mostly immobile.
Since Hayden was diagnosed in 2002, the gene that causes this horrific condition was discovered in 2006, multiple pharmaceutical companies started working to find safe and effective treatments, and FOP gene therapy research began. Currently, there is one approved treatment available in a few countries, and there are five active clinical trials for more potential treatments. This is an amazing accomplishment considering that most genetic conditions never find a single treatment.
Hayden wasn't able to live long enough to see a cure for FOP or benefit from multiple, effective treatment options. But we want to continue the hope he had that, one day, there would be a cure for FOP.
Please consider donating to the IFOPA in memory of Hayden. If you prefer, you can send a check to:
IFOPA
PO Box 800084
Kansas City, MO 64180