Today is the 3-year anniversary of the day we learned Zip has FOP. Fibrodyspasia Ossificans Progressiva affects muscles, joints, and connective tissue, turning them to bone. Without a cure, his body will eventually lock into a position of its choice.
The support of the FOP community and our local community has given us the strength to continue day to day. Zip endured 18 months of flare-ups when they started. His neck and spine are fused. His shoulders are pinned and his left arm is locked. The next 18 months, fortunately, were pretty quiet. He had one flare-up in his ribcage about 3 weeks ago, but we are flare-free again for the moment.
Good and Bad.
Good because there are no flare-ups.
Bad because I’m always waiting for them.
Research in FOP has advanced tremendously in the time since we’ve joined the FOP community. Clinical trials will be starting this summer and more are on the horizon.
Being diagnosed with FOP makes your family diagnosed as a fundraiser. As you know, funding for research comes mostly from families of those affected.
The first is that we’ve changed the location to the Claremore Expo. The size and parking at the new location should better accommodate the event.
The second is that we’ve added a 5K to the event. It will be at 3:00 on October 4th and it will start and stop at event location. Pelco has generously offered to cover the cost of the race; therefore, all entrance fees will be donated to research! Plus, you get a super cool tennis ball yellow tshirt (Zip’s favorite color).
The third change is that the vehicle drawing will be a “Winner’s Choice” this year. The winner will get to take their pick from a 2014 Dodge 100-Year Anniversary Challenger, 2014 4-door Jeep Wrangler, or a 2014 Ram truck.
We are also going to offer an “event” t shirt that will be offered via online sales before the event. It is a gray-on-gray shirt with a ZipperQ logo on the front and sponsor listings on the back.
We are currently looking for sponsors and for auction items. Any way you can help would be appreciated.
You can see more details, register for the 5K, register a BBQ team, or buy your raffle ticket online at www.ZipperQ.com.
Thank you for putting up with my rambling and helping if you can.