Community invited to ‘speak out’ in September, CMT Awareness Month
CMTA, HNF, and CMT Research Foundation among groups running campaigns
For Charcot-Marie-Tooth (CMT) disease Awareness Month this September, supporters are taking to social media to put a spotlight on the relatively unknown neuromuscular disease.
CMT is a group of diseases affecting the network of nerves throughout the body that are involved in sensation and movement. It is one of the most common inherited neurological diseases, affecting an estimated 126,000 people in the U.S. and 2.6 million people globally. Still, many others haven’t heard of it.
For its part, the CMT Association (CMTA) is promoting a #LetsBeatCMT social media initiative designed to encourage people in the community to share their experiences with the disease, and to engage and inspire others to get involved.
Speaking out to ‘create change’ and ‘break the silence surrounding CMT’
CMTA provides a social media toolkit on its awareness month webpage that includes sample social media posts and content tips. Participants can post photos and videos, or otherwise share their CMT experiences on social media using the #LetsBeatCMT hashtag.
The Hereditary Neuropathy Foundation (HNF) also is running a similar social media campaign, and its theme of “CMT Speak Out” is a call for individuals to share their stories.
“Speaking out isn’t just about visibility; it’s about creating change,” the HNF stated on its own Awareness Month webpage. “By sharing your journey, advocating for better care, and informing research, you help break the silence surrounding CMT.”
“In a world where so few know about this condition, your voice can spark understanding, foster support, and drive progress,” it added.
Toward that goal, the HNF offers 10 key ways to speak out for CMT this month.
For one, supporters are encouraged to use social media to share how CMT affects their lives, using the hashtags #CMTSpeakOut and #CMTWeGotThis. HNF also offers a Facebook photo frame.
Other ways the foundation encourages patients to “speak out” include:
- Telling doctors about needed care, with help from HNF’s patient resources
- Using the CMT self-care journal to speak to yourself with kindness. The journal is available as a free PDF or for purchase on Amazon, with proceeds supporting CMT research and programs
- Speaking up when you need help from friends or family
- Educating researchers by joining the Global Registry for Inherited Neuropathies, creating a profile and completing surveys that are used by these scientists
- Join or host a Team CMT fundraiser to raise awareness in your local community
- Advocating for disability accommodations and legal rights
- Offering CMT tips that work for you as a patient, and posting them on social media or emailing them to HNF.
Finally, supporters are encouraged to donate to the HNF in support of CMT research and programs.
The CMT Research Foundation aims to turn awareness month into CMT action month. A lineup of events throughout September will bring CMT advocates from across the U.S. together.
Supporters are encouraged to donate or start their own fundraising event. On a foundation events webpage, a digital toolkit with graphics about CMT for social media sharing is available to help individuals find ways to take action.
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