Tuesday, August 15, 2023
Sunday, September 18, 2022
In Sept 2002, Hayden was diagnosed with FOP, a rare debilitating bone condition that will eventually leave him frozen in his own body unless a cure is found. At the time there was no cure or therapies available. In 2006, the gene mutation which causes FOP was discovered and since then the race has been on to find a treatment and a cure. While there are several drug trials going on right now which, if FDA approved, will provide a treatment for FOP. It is gene therapy that will ultimately be the cure for Hayden and the rest of the FOP community.
For the third year in a row, our FOP community will come together for In Pursuit of a Cure- an annual global event that supports the IFOPA's first-ever gene therapy research program and helps support the advancement of clinical trial research. Please join me in supporting this program by donating here.
Monday, February 28, 2022
or discovering long, lost ancient ruins
any therapies or treatments.
Cancer and AIDS combined.
and community outreach
|Researchers in the FOP lab at University of Pennsylvania.|
Meiqi Xu, Drs Frederick Kapkab and Eileen Shore
There are currently 9 ongoing drug trials for FOP treatments.
|Hayden Pheif, skiing in 2008, at the Far West|
Disabled Sports Center in Alpine Meadows, CA
will go to "great lengths" to fundraise for research
|Team "Girls with Grit" ran the Napa Valley Ragnar|
(36 hour - 206 Mile) Relay in September to as a fundraiser
for Hayden's Hope.
|Jeannie Peeper with Dr. Frederick Kaplan,|
head of FOP research at U of Penn, at the 25th
anniversary IFOPA celebration.
These people are rare in a very special way.
They give us hope.
Even though the people afflicted with rare diseases