Virtual Activities Abound for CMT Awareness Month in September

Virtual Activities Abound for CMT Awareness Month in September
5
(1)

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.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Total Posts: 2
Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência. Inês currently works as a Managing Science Editor, striving to deliver the latest scientific advances to patient communities in a clear and accurate manner.
×
Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Latest Posts
  • CMT Awareness Month

How useful was this post?

Click on a star to rate it!

Average rating 5 / 5. Vote count: 1

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?