Hayden's Hope

Tuesday, August 15, 2023

In Pursuit of a Cure 2023


Hayden's life was permanently altered when he was diagnosed 
with FOP in 2002 at the tender age of 2-1/2.  

FOP is one of the rarest, most disabling genetic conditions known 
to medicine.  It occurs in approximately 1 in 1 million 
people world wide.

It causes bone to form in muscles, tendons, ligaments and other 
connective tissues rendering the person immobile.  
Essentially frozen within a second skeleton.

In 2006, the FOP gene was discovered by the 
FOP Lab at U of Penn.  Since then, the IFOPA has been working 
towards finding multiple therapies for those with FOP.

Please help us, Hayden and the FOP community on our 
relentless mission to find a therapy and a cure for FOP 
by donating to the In Pursuit of a Cure Fundraiser. 

Please join us at an exclusive LIVE research webinar on August 30th. 
There will be three time options available so you can hear updates on 
gene therapy research and learn about research priorities.  
This is an exciting opportunity to learn how your donation is 
making an impact.  


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