Allison (Sharpe) Moore sits in a sunny room in her family’s house on a quiet street in Amagansett, fielding phone calls, serving chips and guacamole, and ripe cantaloupe from the kitchen, while making sure that her friend, B East RealRyder Fitness Studio owner Romaine Gordon, and this reporter got glasses of ice water. Moore wears cumbersome 12-pound braces on her legs, but she brims with energy. She’s chatting about the upcoming events on July 21 and July 23 that benefit the Hereditary Neuropathy Foundation, an organization she founded in 2001 to promote the health and well-being of people like her who live with Charcot-Marie-Tooth (CMT).
The disease is incurable and one of the most commonly inherited neurological disorders, with more than 2.6 million people worldwide suffering from it. CMT causes muscle atrophy, deformities in the feet, legs, arms and hands, frequent falling and tripping, vocal chord paralysis and scoliosis–symptoms range from mild to severe and onset can occur any time from childhood to late adulthood. [expand]
In 1994, a newly-married 29-year-old Moore was training for the New York City Marathon. Her hip was bothering her. After several visits to health practitioners, she received a phone call on Memorial Day of that year with bad news: she had synovial sarcoma (cancer). She was given heavy doses of a chemotherapy drug that is life-threatening for people with a family history of CMT. It also causes the symptoms of CMT (Moore had none at the time) to virulently and aggressively take over the body.
This brings up another aspect of CMT, one that is addressed in a forthcoming documentary called Bernadette by Run Amuck Productions–denial. For many families that carry the CMT gene, the disease has been a family secret. “My uncle has it and we were told he had polio as a child,” she says. However, in 1994 her family had no idea that it was a hereditary disease.
After starting the foundation, she also began to reclaim the part of her that had a passion for exercise, despite her symptoms. One exercise that she found she could do was spinning, as long as she was sitting on a stationary bike, she could take off her braces and pedal. Though most people with CMT are told they can only handle mild exercise, Moore has found differently, and studies are beginning to show that lots of exercise can help stave off symptoms and slow the progression of the disease.
Three years ago, just after Gordon opened her Amagansett studio, Moore’s mother called and “told me a new spinning studio had just opened up. My mom and I drove into town and were walking up and down Main Street looking for it. I saw this woman, and asked her, ‘Do you know where the new spinning studio is?’ She looked at me and said, ‘Yes, it’s mine. Come with me.’”
Moore and Gordon were instant friends. Moore told Gordon that first day that she wanted to have a Spin-a-Thon for CMT. Gordon said, “I’m in.” This will be the third summer that B East has hosted the event.
For her part, Gordon has never seen Moore as someone with “special needs.” She’s as tough on Moore as she is on all of her clients. (Alec Baldwin, a B East enthusiast, tweeted recently, “Romaine, that’s French for man-up.”)
In fact, Moore was recently certified as a RealRyder spin instructor. She will have her first experience teaching at the July 23 Spin-a-Thon from 3 to 4 p.m.
RealRyder bikes are similar to other stationary and spinning bikes, except the rider is able to move the bike vertically, like the experience of being on a real bike, such as leaning your whole body into a curve. “It really strengthens my core, helps with my stability,” Moore said.
With the “amazing” support of her husband, Robert, and her two boys, Christopher, 13, and Thomas, 10, she has dedicated her life to this cause, “24/7.
Several of Moore’s Amagansett neighbors will be participating in the benefit, including Mandala Yoga, Stephen Talkhouse and D’Canela restaurant. On Thursday, July 21, from 7 to 9 p.m. at the Talkhouse, there will be a kick-off cocktail party. Tickets cost $20, which includes “one drink and bites.” Saturday’s Spin/Yoga-Thon runs from 2 to 4 p.m., and that night from 7 to 11 p.m. at Hoie Hall at St. Luke’s in East Hampton there will be a benefit cocktail party and dinner. The whole event—spin and/or yoga and after-party—costs $75, after-party only is $100 w/r.s.v.p. or $125 the day of.
More information on CMT and the Hereditary Neuropathy Foundation can be found at www.hnf-cure.org or by calling 1-855-HELPCMT. [/expand]