A lot has happened in the 12 years since Zip was diagnosed. I will never forget the first ZipperQ and how our community stepped up to help. Since then, Zip has changed a lot as well as the FOP community. Probably the biggest change recently is, Zip is driving! He got his driver’s license over the summer and is a sophomore at Claremore High School.
In 2011, there was no cure or treatment for FOP. While there is still no cure, the first drug for FOP (Palovarotene) was approved by the FDA this summer. This is an important first step in what could be a combination of medicines (a cocktail of sorts) that help ward off further progression of the condition. While Zip personally isn’t on Palovarotene, he is currently on a different drug trial. If you’ve seen our recent social media posts in San Francisco, now you know why! We are very grateful for the opportunity to participate in such an important step for current and future FOP’ers. There are currently 9 different drugs in different phases of study.
Since that time the IFOPA has also created and owns its own Patient Registry. This is a monumental task to complete and upkeep, but the data that lies within it is critically important to future trial work. The IFOPA also provides countless resources to patients and is a companion to those interested in research around the world.
The community of Claremore, through ZipperQ, has donated over 1 million dollars to the IFOPA to help fund all of these amazing things and we are not finished yet!
ZipperQ12 will be Saturday, October 7th at the Claremore Expo. Barbecue tasting will start at 4. Live music from Jake Brake and The Bison will be from 3-7. Free pop, water, and kids games. $10 unlimited beers.
You can buy t-shirts, hoodies, and sweatshirts HERE
Or purchase raffle tickets for a $1300 Hasty Bake smoker, donate, or sign up a team at www.ZipperQ.com
A heartfelt thank you to our many sponsors, volunteers, and donors.
-Amy Gordon
