Altadena mother swaps wheelchair for bicycle to ride for neuromuscular disorder
By Sara Cardine 02/07/2013
On Saturday, Altadena’s Beth Bax will join thousands of other cyclists at the 15th Annual Tour de Palm Springs, an event designed to raise money for nonprofit organizations that serve their local communities.
Riders will bike different distances, ranging from 1 to 100 miles. Bax plans to cover 25 miles in her recumbent bicycle and will be one of a 13-member team that includes her 11-year-old daughter, Natalie. Her team, Beth’s Biking Beauties, will join others from across the nation to raise awareness of Friedreich’s ataxia, a debilitating genetic disorder that affects the body’s heart and muscles. Together the teams will converge as Team FARA, whose proceeds will go to the Friedreich’s Ataxia Research Alliance.
It is a cause that is especially important to Bax. The 43-year-old engineer and mother of two was herself diagnosed with the rare disorder at age 30.
“I was forever clumsy, but I got progressively clumsier,” Bax said in an interview Monday. “In my late 20s, I started going to neurologists because I knew something was wrong with me.”
Since the diagnosis, Bax’s physical condition has steadily declined — she broke her leg eight years ago while trying to pick up a sock from the floor and never really recovered her ability to walk after that. Today, she gets around with the help of a wheelchair.
Despite her prognosis, Bax counts herself lucky. Most people with Friedreich’s ataxia (FA) are diagnosed at age 8 or 9 and end up in a wheelchair by the time they’re teenagers. Her particular condition, by comparison, is a bit milder.
FA, which occurs when both biological parents pass along a specific gene defect, is thought to affect 1 in 50,000 Americans, or just over 6,200 people. In addition to muscle degeneration, people may experience speech problems, changes in vision, a loss of coordination and sensation in their lower limbs and may eventually suffer from spinal problems like scoliosis, or even heart failure.
Bax says promising work is being done on the research front, but more awareness and funding are needed. And if that means gearing up for cycling practice instead of enjoying a recent Super Bowl Sunday, that’s what she’ll do.
“This is not the easiest thing for me,” she confessed. “But I want people to know about this disease.”
Bax and her daughter will arrive at the event Friday evening, where they will work an information booth and share their FA knowledge with others before the day of the ride. So far, Beth’s Biking Beauties is about three-quarters of the way to reaching its fundraising goal of $10,000.
“There are so many sparks of hope out there, but we just need more research funding,” Bax said.
For learn about the Tour de Palm Springs, visit tourdepalmsprings.com. To learn more about Friedreich’s ataxia, visit curefa.org. To make a donation to Bax’s team, go to fara.kintera.org/faf/home/default.asp?ievent=1045441 and click on “Beth’s Biking Beauties” or “Beth Bax” on the right hand side of the Web page.