Those who wish to control their own lives and move beyond existence as mere clients and consumers—those people ride a bike.
—Wolfgang Sachs, of the Wuppertal Institute for Climate, Environment and Energy, Germany, and the former chairman of Greenpeace Germany
On September 23, 2011, Anthony Brown, PhD, arrived at the Eiffel Tower in Paris, France, to the fanfare of well-wishers, family, and friends. He and two companions had just completed a 350-mile bicycle trip to bring awareness to the hereditary, neurological disorder Charcot-Marie-Tooth (CMT) disease, and raise funds for the charity CMT United Kingdom. Born with CMT, it wasn't until this past year that Brown decided to speak openly about it, and in a manner that commanded attention—thus, the ride. Brown credits the silicone ankle foot orthoses (SAFOs) he wears on both legs for allowing him to continue to pursue his passion of bicycling and complete the ride. (Author's note: SAFOs, an alternative to traditional rigid AFOs, were invented and patented by prosthetist Bob Watts, founder of Dorset Orthopaedic, headquartered in Hampshire, England.)
The September trip coincided with CMT Awareness Month, and the route was planned such that the first and last day linked the medical institutions where the CMT discoverers were educated and/or employed, Brown explains.Day one of the England-to-Paris trip began in his home town of Cambridge, where British neurologist and physician Howard Henry Tooth, MD (1856–1925), was educated. He continued through London, passing St. Bartholomew's Hospital, where Tooth later worked as a physician, and ended in Kent. It was a 113-mile day. Day two was a 75-mile ride, which required a stop for a ferry crossing to Callais, France. Day three was a 109-mile ride toward Paris. The final leg of the trip was a 55-mile trek into the center of Paris, where Jean-Martin Charcot, MD (1825–1893), a founder of modern neurology, and Pierre Marie, MD (1853–1940), studied and worked (at Salpetriere Hospital), ending at the Eiffel Tower. Throughout the journey, the cyclists conquered the challenges of crowded city streets, an "infuriating, steady, and strong southerly headwind," a severe rainstorm, a total elevation gain of 15,000 feet, not to mention physical and mental fatigue—which Brown says affected him between the 60- to 70-mile points on the longer days.
Brown, 39, says his love of cycling began when he learned to ride his Raleigh Striker without training wheels, at the age of seven. "I can remember days of frustrating wobbles and falls on the bumpy grass in my local park before my mum finally convinced me it would be easier on the tarmac path," he says. "Just one push on the tarmac was enough to get me going, and I feel like I haven't stopped since."
For a boy who was "uncoordinated," "the slowest runner, the least enthusiastic walker, and the last one picked for the football team," according to Brown, cycling became the equalizer. It helped him to keep up with his friends when he was younger and now allows him to pursue athletic challenges such as the Paris ride, as well as to share a sport with his young sons and wife.
"With CMT I was never going to be that traveler on foot. I'm grateful to my mum that bicycles were a part of my childhood that I could fall back on," Brown says.
In his early teens, Brown says his mother became concerned about the "clawing in his feet and skinny calf muscles." The first orthopedic surgeon missed the diagnosis. However, with "clear suspicions" of her father's medical history—which came to light after his death—Brown's mother took him to an orthopedic surgeon who diagnosed Brown, then 14 years old, with CMT Type 1X. CMT Type 1X is X-linked—meaning it is expressed in males and passed down through females. Brown's brother Matthew, who drove the support van for the cycling adventure, also has CMT Type 1X.
A molecular geneticist, Brown eschews the notion that his diagnosis contributed to his career choice. "I consider myself to be an engineer whose preferred choice of study is DNA," he says. "I like to know how things work, how to make them work better, and how to fix them when they are broken." However, he admits to overlap in his work and CMT—for which there are dozens of genes believed to be responsible for its different forms. "The most common form [of CMT] is Type 1A, caused by a duplication of the PMP22 gene on chromosome 17," Brown explains. "This gene is indeed included in genetic screening tools, which I have designed and manufactured…. [However,] if my diagnosis did contribute to my career choice, it was deep in my subconscious!"
While Brown says it is easy, in hindsight, to see that CMT has always affected him and his symptoms may have been obvious to others, he always thought of himself as "normal" and considered CMT to be a "third-party condition." It wasn't until the last five years that he says his symptoms have become more obvious—affecting his gait because of the foot drop, needing two hands to pick up a pint of beer, or struggling to turn the page of a book. In 2008, when he recognized that he had begun to avoid walking in favor of driving or cycling "because of the discomfort and sheer hard work of walking with foot drop on both feet," Brown says he made an appointment with his local hospital's orthotics clinic. He was encouraged to try "rigid and flexible conventional ankle orthoses." While conventional AFOs offered support needed during walking, he says they were "uncomfortable, indiscreet, and impractical, not to mention I simply couldn't find a way to ride a bicycle using them!" Brown says that a physiotherapist at the clinic suggested he investigate whether SAFOs were an appropriate alternative, which is what prompted him to contact Dorset Orthopaedic. In turn, Dorset Orthopaedic arranged for Brown to meet Chris Bracknall at Anglia Private Orthotics Clinic (APOC), who "very quickly organized castings and a sale-or-return trial on a pair of SAFOs," Brown says.
SAFOs, which support the front of the legs down to the top of the feet—allowing the user to lift his foot while the leg swings during walking—are the perfect answer to address his foot drop, Brown says. He can wear them while walking barefoot, and they are comfortable to wear even up to 16 hours per day. He also can wear them under socks and in most shoes—including his cycling shoes. His walking pace has increased, and he says that he now walks his children to school every morning—"a task which I would have dreaded before I tried SAFOs," he says. Moreover, they make him "feel normal when walking or standing with colleagues or strangers—which is a huge confidence boost," he adds.
This desire to appear "normal" and the possibility that others' perception of him "might change to the worse" is what Brown says were his main concerns when speaking openly about CMT. He now sees that his concerns was unwarranted. "My family has always supported me, and I think that my experiences and hard work this year have made them proud," he says. "My friends support me by continuing to treat me as the friend I always have been. In fact, that I can detect no change in their perception is the best outcome I could have hoped for. It's proof—although I'm not now sure why I needed it—that a disability or disease does not detract from what you are, or from what you can achieve or have achieved in your life."
Brown says he has already set his sights on his next cycling goals: a two-day, 130-mile-per-day trip in hilly northern England this summer, and he eventually plans to cycle up the southern France peak of Mount Ventoux of Tour-de-France fame. Brown says his hope is that his accomplishments inspire "anyone, able-bodied or otherwise, to experience for themselves the satisfaction and achievement of substantial physical endurance targets, in particular those that involve the bicycle." He would particularly like to inspire others with CMT to "recognize the value of those physical challenges for self-esteem, confidence, [and] mental and physical well-being."
Laura Fonda Hochnadel can be reached at