#CureFOP: The Search from Claremore

fop3-minOver the past couple of days, I have had the honor to participate in the IFOPA Drug Development Forum. Over 170 researchers, clinicians, pharma representatives and families came together in a unique way to discuss FOP. The number was up by 100 people since the last forum two years ago; mind-numbingly, this is approximately 20% of the known patient population.

There were five blocks of 12-minute talks by researchers followed by group discussion. Every day ended with a patient panel for FOP’ers to tell their stories to the group.

I tried not to be too emotional, but those of you who know me well know that even the board meetings get to me. The fact that 12 people will travel annually and meet six times per year to help forward advocacy and research for FOP is overwhelming. You can imagine I found myself in awe at this event.

Two days packed full of meetings with all of the rock stars of the FOP research and development world. It was truly an amazing experience.

I’m a car girl by trade, so I have to tell you that a lot of the in-depth discussion went over my head. However, I am proud to say that I did understand about 70% of it. The discussions were both captivating and emotional.

fop2-minTo the FOP families out there, the message is so hopeful. There are more things on the horizon and many people fighting to get you or your babies a treatment as soon as they can.

To those who donate to ZipperQ, THANK YOU! Because of your donations, the IFOPA was able to hold this unique interactive session and help fund much of the research being done.

I’ve always said if we had to have something crazy, this is the crazy to have. The whole community, from the clinicians to the researchers and the pharmaceutical companies to the lab, and most importantly, the patients and the families, have my heart.

One day I will get to write to you all that an effective treatment for FOP has been found. Maybe not tomorrow or next year, but I’m confident that it will be found.

#cureFOP
#DDF2016

-AG
zipamy

 

 

Latest articles

Vallejo Leads Hillcats In Season Opening Meet at MIAA...

The Rogers State men's track and field team opened up the indoor track & field season on Saturday at the MIAA Rust Buster, hosted...

Claremore Main Street Announces Souper Saturday Winners!

Claremore Main Street held its annual Souper Saturday event on January 9, and the competition was definitely heating up this year! If you're unfamiliar with...

You Could Win CASH and a TV at Will...

Cherokee Casino Will Rogers Downs is giving away tons of cash PLUS a big screen TV, just in time for your socially-distanced Super Bowl...

Claremore Public Schools Foundation Brainiac Brawl Goes Virtual

Saturday, February 6th, the Claremore Public Schools Foundation (CPSF) will hold their annual Brainiac Brawl trivia competition. CPSF works directly with the schools providing...

Similar articles