Phoenix Fox Foundation Takes Flight
The last time we visited with George and Gina Fox and their son, Phoenix, in 2011, the family was poised to embark on an experimental gene therapy treatment at UF that would hopefully improve his respiratory function. Phoenix is now 12 years old and has lived with Pompe Disease, a form of muscular dystrophy caused by an incorrect or missing enzyme called acid alpha glucosidase, his entire life. Pompe Disease affects nearly every muscle in the body, meaning Phoenix’s mobility and respiratory functions have been severely compromised by the disease.
Thanks to the help of Dr. Barry Byrne, a pediatric cardiologist at UF, the Fox’s have been able to improve Phoenix’s quality of life. As a family, and now as a non-profit, The Phoenix Fox Foundation, they support one of the leading doctors in gene therapy research toward finding progressive and alternative ways to treat the disease.
During the most robust period following Phoenix’s gene therapy in 2011, which consisted of injecting genes into his diaphragm via non disease-causing viruses, he was able to breathe on his own for nearly three uninterrupted hours. Most Pompe patients can’t stay off a ventilator for more than a few minutes, if at all, so the initial signs of progress were extremely encouraging to the Fox family.
“Breathing independently helps a lot for patients and families for mobility and taking a bath and things you wouldn’t normally think about being a problem when you can breathe on your own,” George Fox said. “You don’t have to worry so much about something happening to him during normal, everyday tasks.”
Though Phoenix’s respiratory function has regressed some since the most fruitful portion of his treatment, Fox said it’s still nice to see the positives.
“That’s all part of the process,” he said. “There are minimal gains and minimal losses. A lot of disabled kids are in special facilities or they’re in bed. I have a golf cart with a special chair so I can take him to the golf course in Haile Plantation and into nature. He can see hawks and turtles and snakes. I try to get him out into the world and every time we see something different.”
At home, Phoenix surfs the Internet just like any other child with a special mouse designed for him by his father. When he’s lying down he uses a special head tracker which moves the cursor to use the computer. Through it, he can type and vocalize with his parents. He participates in home schooling. Aside from his disease, he’s just like any normal 12-year-old boy, but in order for his life to improve, and the lives of other Pompe disease patients to improve, the science of gene therapy must progress. George Fox is doing everything in his power to help raise money to fund Dr. Byrne’s research, so the delivery methods and effectiveness of gene replacement can reach new heights.
“Phoenix is alive today because of research done in the past,” Fox said. “There are families and kids that weren’t so lucky, that just missed the boat on breakthrough treatments. I feel like it’s my job to keep the process going; to not stop running when I’m handed the baton so the next generation has the next form of treatment, whatever it may be.
According to the Phoenix Fox Foundation mission statement, “The Innovators of yesterday make our today possible.” To the Fox’s, the foundation represents their token of gratitude, but more importantly it represents their passion for rare disease research.
The Phoenix Fox Foundation is just getting off the ground, and to this point a lot of the fundraising has come in small chunks. Though the foundation is small now, with only three officers, the hope is for it to grow as more dollars and awareness are raised.
Fox plans to use standard fundraising practices for the near future. In November, the foundation plans to host a golf tournament called the Phoenix Fox Caddyshack Classic. It will be geared toward making golf fun for the average golfer, and hopefully bring more appeal to the standard scramble-format golf tournament, Fox said. The foundation is also going to set up a charity run near the Tioga Town Center, where Gina Fox runs a women’s retail boutique called Down To Earth. A portion of her sales already benefit Pompe research.
“There’s a lot of stuff coming down the pipeline with gene therapy research,” Fox said. “Every component of the research needs to be funded from the ground up. We can develop different mechanisms of injecting the gene therapy to address the nervous system directly. We can see if there are different ways of treating the disease as a whole. We can advance the science.”
Fox believes that gene therapy is the future of medicine, and he can’t wait to see it unfold. He is fully committed to telling anyone who will listen about Pompe Disease; about his family’s experience and about how the Gainesville medical community is at the precipice of medical breakthroughs. Fox is doing the grassroots legwork so scientists can spend their time doing what they do best instead of soliciting grants from private drug companies and other associations. He is the voice his son doesn’t have.