September Is Charcot-Marie-Tooth Awareness Month
September is Charcot-Marie-Tooth (CMT) awareness month, and the Hereditary Neuropathy Foundation (HNF) suggests it is an ideal time to increase awareness — among the general public, educators, legislators, and physicians — about accurately diagnosing CMT and other inherited neuropathies (nerve diseases).
In a press release announcing the month-long observation, the nonprofit HNF described CMT as “The biggest disease most people have never heard of,” noting that, although it affects millions worldwide, most people — including many doctors and people with undiagnosed CMT — are largely unaware of the disease.
In addition to raising awareness, the HNF suggests CMT awareness month is a good time to engage in fundraising to help people living with CMT and to spur research.
“Together, we can raise awareness, funds for research and support the community by joining HNF’s activities and participating in events across the country” said Allison Moore, founder and CEO of HNF.
In support of this, the HNF is hosting two spin fundraisers this September:
“This event is close to my heart because my mother, brother and I all have CMT,” said Tara Emerson, a spin instructor at Revolution Fitness. “It’s important that we raise awareness about the disease and that we find a cure, for the sake of my family and my future family. Also, I started spinning when my legs could no longer handle running. Being on the spin bike made me feel like an athlete again. I could go fast, not worry about falling and most importantly I was never left behind or ‘too slow’ to do it. I think spinning is a great way to keep CMT patients moving and strong!” she said.
The second spin event will take place in Boston on Sept. 28; it is being co-hosted by Pi Kappa Epsilon (Pike), a fraternity at Boston University (BU). More information and registration for this event can be found here.
“We are extremely excited to be working together with the Hereditary Neuropathy Foundation on the Team CMT Spin to help raise money for CMT research and programs,” said Connor Cox, the president of Pike at BU.
To help these efforts, the foundation also suggests hosting a community event, enlisting in HNF’s patient registry for updates on research and clinical trials, becoming part of the Movement is Medicine program, donating to the Therapeutic Research in Accelerated Discovery Program, joining team CMT, and adding this “twibbon“ to social media pages.