Hayden's Hope

Monday, April 23, 2018

Celebrating 30 years of the IFOPA



Every year, April 23th is the FOP Awareness Day.  This year is even more special because it marks the 30th anniversary of the founding of the International FOP Association by Jeannie Peeper.
Click here to read more about how this amazing women started it all with some letters.

Tuesday, February 27, 2018

RARE Disease Day













Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

It is estimated that FOP affects about 3,500 people worldwide, or approximately one in two million people. Such statistics may be better grasped by the following example: if a large football stadium holds 100,000 fans, one would need to fill nearly 20 football stadiums to find one person who has FOP. At the present time, researchers are aware of approximately 800 people throughout the world who have FOP.

Wednesday, January 24, 2018

Hayden to enroll in the Clementia Drug Trial.

John and I are so excited about this. Hayden is enrolling in the drug trial at UCSF in 2 weeks. 
Fingers crossed.