By: Cheena Pazzo | Category: In Our Communities | Issue: October 2013
Zip Gordon (center) joined by (L to R) Avery and Addison Clyma (friends), Callie James (cousin), and big sister Arlie Gordon in front of the 2013 Jeep Wrangler that is being raffled.
The Gordon family is working hard to raise awareness for their son, who is battling a rare genetic disorder called Fibrodysplasia Ossificans Progressiva (FOP) or “Stone Man Disease.”
Zip was diagnosed with FOP in July of 2011 at age 4. Friends and family are hosting the second annual ZipperQ event to raise money for the International FOP Association (IFOPA), which funds FOP Research while supporting children like Zip and their families through education, advocacy and public awareness. Last year’s event raised $160,000 – the largest amount ever raised at an Oklahoma IFOPA event.
FOP is one of the rarest, most disabling genetic conditions known to medicine, affecting 1 in 2 million with only 800 confirmed cases worldwide. The FOP gene mutation causes muscles to gradually turn into bone. Falls, bumps, and even the flu can trigger rapid muscle loss due to new bone growth. Those affected with FOP can potentially become enclosed in a second skeleton.
The second annual ZipperQ will be held October 5, 2013 at The Nut House on historic Route 66 in Claremore to raise money to help find a cure for FOP. All proceeds will go directly to the IFOPA.
At the event, Zip will draw the winning ticket for a 2013 Jeep Wrangler. The $25 tickets are available for purchase now on ZipperQ.com to fund FOP research to help Zip and other children who need treatment to end this disorder. In addition, teams can sign up online to participate in the barbecue competition.
“We are honored to have support across the state for Zip’s cause," said Amy Gordon, Zip’s mother. “This is a fun family-oriented event, complete with excellent barbecue and an incredible range of auction items to suit everyone’s interest. Together we will find a cure!”
“The disease is progressive, meaning it gets worse with time. We need a cure or treatment as quickly as possible to avoid additional long term damage,” Gordon added. “Flare-ups can occur spontaneously or following bodily trauma, such as childhood immunizations, falls while playing and viral illnesses.”
According to FOP researchers, the information obtained from studying this disease will have far reaching implications for the treatment of common disorders such as fractures, osteoporosis, hip replacement surgery, and other forms of heterotopic ossification that occur in trauma and burn victims including our wounded warriors.
“We are encouraged by all developments that will lead to meaningful clinical trials,” said Zip’s physician, Dr. Fred Kaplan.
Basic research on FOP is beginning to provide the scientific basis for the rational design of meaningful clinical trials. Although we are not quite there, it is exciting to know Clementia Pharmaceuticals (Montreal) has licensed Palovarotene from Roche Pharmaceuticals, culminating months of collaboration among Dr. Maurizio Pacifici and Dr. Masahiro Iwamoto from the Children’s Hospital of Philadelphia (CHOP), and Dr. Fred Kaplan, Dr. Robert Pignolo, and Dr. Eileen Shore from the University of Pennsylvania.
To learn more about FOP, research, and ZipperQ please visit www.ifopa.org.