Liz Lawler - Carol Tagliaferri - Kelly Bates - Lora Anderson - Megan Olsen
Sunday June 9th, Team Hayden's Hope will be running the Dipsea Race in honor of Hayden and the Int’l FOP Association to raise awareness and funds research for a debilitating disease called Fibrodysplasia Ossificans Progressiva or FOP.
Hayden was diagnosed with FOP on Sept 11, 2002. This genetic disease affects 1 in 2million people. He is one of 800 people in the world with the condition. Slowly his muscles are turning to bone, creating a second skeleton, rendering him immobile.
Since Hayden was diagnosed in 2002, the gene that causes this horrific condition was discovered in 2006, multiple pharmaceutical companies have started collaborating to find a therapy. Currently, there are three active and recruiting drug trials for a potential therapy. This is an amazing accomplishment considering that most genetic conditions never find a therapy. There are no genetic conditions that have a cure.
Please consider donating to the IFOPA in honor of Hayden’s Hope. Click here to donate on line. Or if you wish to send a check, please make the check out to the International FOP Association and send to Hayden’s Hope / IFOPA c/o Megan Olsen 164 Tamalpais Avenue, Mill Valley, CA. 94941.
The International FOP Association is a 501c3 and has received a gold rating for transparency from GuideStar.
