Advocates aim to raise visibility of CMT during Awareness Month
Disease 'invisible because no one talks about it,' association says
September is CMT Awareness Month, and organizations are working to increase visibility of Charcot-Marie-Tooth (CMT) disease — a disease that often goes unseen.
“CMT is not invisible because it is rare. It is invisible because no one talks about it,” the Charcot-Marie-Tooth Association stated on its awareness month webpage.
The association encouraged advocates “to join the conversation, share your story, and help others see the reality of life with CMT, whatever it looks like for you.”
Throughout September, the association will be fundraising to bolster its mission of supporting people affected by CMT and accelerating research into new treatments. Each dollar donated during the month will be matched, doubling the impact.
The association is also encouraging people living with CMT to speak out about their experiences on social media, using the hashtag #NowYouSeeCMT, to raise the visibility of CMT in their communities. Caregivers, clinicians, and allies can voice their support by using the hashtag #NowISeeCMT. The Charcot-Marie-Tooth Association has created an awareness frame that can be applied to online profiles to help spread the word on social media.
Photo challenge designed to show disease’s unseen effects
The Hereditary Neuropathy Foundation (HNF) is also working to increase visibility of CMT for this year’s awareness month. The foundation is running the #CMTUnseen Photo Challenge, which aims to highlight the ways in which CMT affects people that aren’t obvious to outside observers.
The challenge encourages people with CMT to share two side-by-side photos: one illustrating how CMT affects them in ways that are visible, and the other highlighting the effects of the disease that often go unnoticed. The HNF is encouraging community members to post photos with the hashtags #CMTUnseen, #HNF4CMT, #CMTAwarenessMonth, and #CMTweGotThis, along with the foundation’s fundraising page or individual social media fundraisers.
The HNF has also created a social media frame and a poster to help share accurate information about CMT during Awareness Month.
“This September, together we can shine a light on CMT, educate others about inherited neuropathies, and inspire hope across our community,” the foundation said.
CMT refers to a group of rare genetic disorders marked by neuropathy (nerve damage), leading to issues with movement and sensation. CMT is estimated to affect more than 3 million people worldwide. CMT Awareness Month takes place every September to raise awareness about this often-unseen condition.
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