Virtual Activities Abound for CMT Awareness Month in September

From participating in a virtual dog walk, to switching out Facebook photo frames, advocates are set to mark Charcot-Marie-Tooth (CMT) Awareness Month, observed every September.

Awareness and education are crucial to increasing the recognition, diagnosis, understanding, and management of CMT, a group of inherited peripheral nervous system disorders that affect roughly one in 2,500 U.S. residents and 2.6 million individuals worldwide.

In playful appreciation of the service dogs many CMT patients rely on, the theme this year is “CMT is Ruff.” As such, the Hereditary Neuropathy Foundation (HNF), which organizes the annual event, is inviting all dog owners, and even those who are not, to “take a bite out of CMT” this month.

“As patients, we know firsthand the challenges that come with living with CMT,” the HNF said in an announcement on its website. “We also know that it can be hard for others to understand what daily life is really like with a neurological disease. But there are those special kinds of friends who bring unconditional love as well as physical and emotional support for so many CMT patients — our pups!”

Supporters who don’t have a dog are encouraged to download, print, and post an image of “Marvin,” the official CMT Service Dog. Tag HNF on social media with the hashtags #cmtisruff and #cmtwegotthis. Go here to view a video of the real Marvin and his owner, Diana.

Supporters can buy event bandanas — for themselves or their pups — and post photos on Instagram or Facebook. They also may join the CMT Dance Party, in which participants post videos of themselves or their dogs dancing. The HNF will share its favorite videos on its social media platforms and in community-wide emails.

To raise CMT research funds as well as awareness, the HNF is presenting a CMT Virtual Dog Walk Sept. 25–26 for advocates and their dogs. In addition to getting friends and associates to financially support the walk, participants are asked to post photos and videos from the event.

For its photo contest, the organization is encouraging advocates to “style” their bandana-wearing pup, and post a photo to Facebook. Those images will be published on the HNF’s Facebook page. The person who submits the photo that gets the most “likes” will receive a $50 Chewy.com gift card.

Another way to participate in CMT Awareness Month is by donating spare change. The HNF has partnered with a mobile app called RoundUp that automatically rounds credit or debit card purchases up to the next dollar, with the added cents going to CMT research.

In addition, supporters may help spread CMT awareness by changing their Facebook profile photo to one that uses a special frame.

The HNF also is presenting a 90-minute interactive virtual master class Sept. 23 aimed at inspiring CMT patients to reach their goals. The workshop will feature Lisa McCarthy, co-founder of the program Fast Forward. Tickets are available with a $25 HNF donation.

A $30 donation will get supporters a CMT Awareness Kit that includes an ankle foot orthoses guide, information about the Global Registry for Inherited Neuropathies, a bumper sticker, a pair of plush socks, and a Neurotoxic Drug Card, which alerts CMT patients about medications and supplements that might worsen their neuropathy. The wallet-size card also can be purchased separately.

Go here to connect with the HNF’s online community and learn more about CMT Awareness Month and other events.