ZipperQ4 has come and gone and once again, our family is humbled by our community’s outpouring of generosity. It takes an army of volunteers to put on such an event and when I think about, it I get a little overwhelmed. So many people from so many places taking time to help raise money for research for our boy.
This year we broke many records, which just fascinates me. Year four of a fundraiser is typically a lull year. Our volunteers worked as hard as ever and the hard work paid off.
October 3rd, 2015
4,500 in attendance
21 BBQ teams competed
The weather was amazing!
And while the final numbers won’t be in for a bit, my gut and calculations tell me that we will have raised about $125,000 at the event! That is a total of $625,000 over the four ZipperQ events that have gone to researching FOP.
Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest, most disabling genetic conditions known to medicine. It causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.
Zip was diagnosed four years ago, and he is the reason for ZipperQ. 75% of research dollars come from families of those affected. There are only 800 cases known worldwide, so every dollar Claremore contributes makes a huge difference.
We are in exciting times for research. Clementia Pharmaceuticals is currently in clinical trials with a promising drug, Palovarotene. I don’t know much about how it is working in human trials, but they have added children to the mix, so I’m guessing it must be showing signs of good things.
Just last month, Regeneron Pharmaceuticals made a groundbreaking discovery about how the gene works. If you are so inclined, you can read the science HERE.
Our family is hopeful that a cure is on the horizon and knowing our community is a part of funding? That is a feeling I can’t really explain.
Thank you a million times over. And that’s not really enough ‘thank yous’.
Special thanks: Jacob Gordon, Arlie Gordon, Robert Melton, Jennifer Melton, Sandy Melton, Rob Melton, Robin Stratton, Angela James, Kris Winters, Dason Gwartney, Steve Angle, Jason Clyma, Lindsay Clyma, Natalie Jones, Tiffany Jordan, Cheena Pazzo, Jack Gordon, Jr., Elise Gordon, Stephanie Koetting, Michelle Brasher, Terrie Neely, Ginger Holley, Megan Ballew, Danielle Frasier, Jackie Clement, Sarah Lepak, Linda Lepak, Rosie Halpin, Mark Collins, Becky Collins, Mark Proctor, Mike Barham and the Honky Tonk Prophets, Cole Lynch, Eric Kennedy, Stacy and Willbur Lee, Travis Peck, Ashley Orf, Kevin Couch, the Claremore High School band, Tim Schaeffer, Chad Weinrich, Jackey Yocham, Tanya Andrews, Ron Bailey, Ms. Linda and Dan, Jason Tessier, Monty Kapchinsky, Brooke Easton and the NTC volunteers, Claremore High School and volunteers, April Koehler, Bailey Stripling, Anna Snipes, Kathleen Duke, Mark Friedel, Matt James, Greg Melton, Zack Santos, Collin Bowlin, Jeff Williams, Kim Stough, Jennifer Collins, Shane McGill, Susan McGill, Tracey Watkins and of course, our BBQ teams and sponsors.
Thanks to the following sponsors: Melton Sales, moreClaremore.com, Pelco Structural, BNSF Railway, Ally, Regent Bank, Spectrum Paint, Cars.com, Ross Group, Premier Consulting Partners, Mullin, Gateway Mortgage Group, YellowHouse John Deere, Jim Glover Chevrolet, Per4mance Physical Therapy, Memorial Machine, Ne-Mar Center, SUMMIT Physical Therapy, and The Home Collection.