It’s September, So Supporters Are Marking CMT Awareness Month

Mary Chapman avatar

by Mary Chapman |

Share this article:

Share article via email
Ukraine relief for rare disease patients | illustration of hands-in collaboration

From sporting special gear to joining a “Band Together” class — a workout session using resistance bands to improve range of motion among Charcot-Marie-Tooth patients — supporters are marking CMT Awareness Month, observed each September.

Advocates say heightening awareness is vital to increasing the recognition, diagnosis, understanding, and management of CMT, a group of inherited peripheral nervous system diseases that affect an estimated one in 2,500 U.S. residents and 2.6 million people globally.

To help spread awareness and raise funds for research and support programming, the Hereditary Neuropathy Foundation (HNF) is offering an Awareness Month Kit for a $30 donation. Each kit contains a pair of plush socks, an ankle-foot orthoses guide, a bumper sticker, and a diagnosis chart. It also has information about the Global Registry for Inherited Neuropathies and a Neurotoxic Drug Card, which alerts CMT patients and providers about medications and supplements that may aggravate their nerve damage.

The HNF also is encouraging supporters to buy and show off CMT Awareness Month swag and gear, such as T-shirts and phone cases. All proceeds go to CMT research and HNF programming.

To help the cause, Awareness Month participants also can also donate spare change. The organization has collaborated with a mobile app called Roundup that automatically rounds up debit or credit card purchases to the next dollar, with the added cents contributing to CMT research.

Recommended Reading
finding self-love | Charcot-Marie-Tooth News | Main graphic for column titled

Paying Attention to the Hope, Joy, and Love in Our Lives

What’s more, supporters may help increase awareness by swapping out their Facebook profile photo to one that uses an HNF commemorative frame.

In addition, the Foundation is presenting two virtual “Band Together” classes this month, on Sept. 17 and Sept. 26, led by Julie Stone, a Movement is Medicine ambassador. The classes incorporate resistance bands that can help boost stamina, flexibility, and range of motion in CMT patients.

To help promote self-care during September, the organization is presenting “30 Days of #CMTselfcare.” On each day, patients are asked to finish the sentence, “I am taking care of myself by …,” and tagging HNF using #cmtwegotthis.

For its CMT Thrive photo contest, the HNF is asking people living with CMT to take a photo showing how they “thrive” despite their condition, and include a short description. Votes may each be purchased for $1, with the top three winning photos nabbing a $50 Amazon card. The entry with the most votes will grace the cover of the fall edition of CMT Update, the HNF’s newsletter about the latest in CMT research.

For its part, the Charcot-Marie-Tooth Association (CMTA) is offering several things supporters can do to help raise awareness, including adding a special Facebook frame on social media and contacting local media outlets about possible CMT stories.

Another way supporters can participate is by buying for themselves or a loved one a $5 CMTA Star, which will be inducted in the CMT Hall of Fame and shared on Sept. 30.

“There’s no shortage of shining stars in the CMTA firmament,” the CMTA states on a webpage about the effort. “That’s what drives us to work harder, longer, and smarter, through good times and bad. That’s why — to us — you and your loved ones are the real celebrities.”

Awareness Month participants also are asked to follow the CMTA on Facebook, where the organization will share videos of patient interviews with some of its STAR Alliance partners. Also, patients are encouraged to help raise awareness by going live on their Facebook page and talking about life with CMT, and tagging the CMTA.

The CMTA Swag Store also is open for Awareness Month, during which participants can choose from and wear new designs of hats and T-shirts, and other items. Proceeds help support the CMTA.