Allison Moore was 29 years old and training for the 1995 New York Marathon when she began experiencing severe symptoms of Charcot-Marie-Tooth Disease (CMT), an inherited neurological disorder affecting nerves in the hands, arms, feet and legs of 1 in 2500 people. The chronic condition eventually affects walking, balance, and fine motor skills. It took Allison several exasperating years to get properly diagnosed as there was little information on the condition. But through the process, she heroically turned her frustration into inspiration and founded the Hereditary Neuropathy Foundation in hopes to find a cure for this perplexing disease.
Today, Allison is busy preparing for The Foundation’s sixth spin-a-thon. Monies raised from the spin-a-thon will go to a lab at University of Southern California researching a cure and treatment for CMT. Allison took up spinning on the advice of her friend, Gary Salmirs, who encouraged her to pick up the sport. Gary, Chief Executive Officer of the wellness program The Ironwill Foundation, not only raised money for diseases, but he had transformed himself through exercise and good nutrition. He talked to Allison about getting into spinning and about putting on a spin-a-thon to raise funds for her Foundation.
At first, Allison was somewhat intimated by the spinning scene. But when she heard that the a new studio with Real Ryder bikes had opened up in her town of Amagansett, New York, she decided to follow Gary’s advice. Since Real Ryder bikes recruit more muscle range than stationary bikes, biking on one wouldn’t overly tax one group of muscles, but rather spread the load across a variety of muscle groups mimicking a real outdoor bike. Furthermore, since the bike moves with a rider’s natural lateral motions, orthopedic stress diminishes. This could be a real breakthrough for Allison. So she contacted Romaine Gordon, owner of the new (B) East studio. Romaine took Allison under her wing and supported her every step of the way by helping her with the mechanics of using the bikes. Additionally, when Allison mentioned a spin-a-thon, Romaine enthusiastically flung herself into the work of hosting one, looking for sponsorships and covering all the basics. After only six weeks of preparation, Allison and Romaine hosted their first spin-a-thon and raised $40,000 for CMT!
On July 23, spinners will participate in the HNF Hamptons Spin for the Cure Spinathon, a two-hour spin to raise awareness and funds to find a cure for CMT. This year, Allison hopes to raise, $250,000, which is nearly $170,000 more from last year! Spinners will be joined by yogis in hopes to attract more participants. Allison believes the benefit of these events is that there is real appeal for people from all walks of life, ages, financial status, and physical ability. An hour on a bike or mat costs $75. Additionally, for weeks leading up to the event, volunteers sell raffle tickets to be awarded during the event, a smart way to recruit participants. Spinners and yogis are encouraged to raise pledges through web pages they’ve created using DoJiggy Online Fundraising Software. This enables them to create a web presence in order to engage friends and family in the cause and easily collect donations. Another plus Allison points out is that once participants create their page, they’re committed and begin working towards their fundraising goals.
Allison calls the online fundraising software a “no-brainer”.
Once you get it done the first time, you clone it. It’s easy and user friendly. It’s a beautiful thing for tracking donations. It’s so simple to generate reports. Individuals can go in set their goals, talk about their inspiration and send emails to friends and family. It also makes tax receipts easy to send.
Besides investing in software, Allison believes in building community. After the spin-a-thon/yoga-thon, participants are treated to a cocktail party. Guests are welcome to join for $75. Allowing people to gather after a shared fundraising event allows even more bonds to form. Even though the spin-a-thon and yoga-thon bring in all kinds of people, everyone is committed to CMT and to their sport. Passions run high and everyone feels as though they’ve pitched in for a good cause doing something they enjoy.
Allison is currently working on receiving a certification to teach people with disabilities. Her hope is to bring these people into the athletic world so they can feel better about themselves and build community. She’s happy to report that CMT is gaining more recognition and awareness in mainstream media such as this article in the New York Times and another one featuring stories from those living with the condition. “My focus is to empower people on what they can do and not what they can’t do”, says Allison. We hope the spin-a-thon and yoga-thon will help Allison do just that.