Hayden's Hope

Wednesday, December 27, 2017

FOP Family Gathering

In the beginning of December, the Int'l FOP Association hosted a family gathering in San Francisco. The IFOPA started hosting family gatherings over 10 years ago.  The purpose is to bring together patients and families in a local region, in our case the West Coast, to learn about the latest FOP research, interact with the world's leading FOP clinicians and to connect with other patients, their families and caregivers.

There were people from Seattle, Sacramento, San Francisco, Fresno and Southern California.  We also had some FOP'ers come from other parts of the country.  It was nice to finally meet some of the friends I had made through the IFOPA's Facebook page in person.   Felt like catching up with old friends.

We heard from two different pharmaceutical companies on their current research and drug trails.  Hayden was also able to meet with the researchers and Dr. Frederick Kaplan to talk about his personal journey with FOP.