CMT Awareness Focuses on Education, Fundraising in September
The Hereditary Neuropathy Foundation is taking the lead on several events, activities throughout the month
From switching out Facebook frames and viewing educational videos, to attending “band” exercise classes and rounding up purchases to the next dollar to benefit research and community programming, supporters are marking Charcot-Marie-Tooth (CMT) Awareness Month, observed every September.
According to advocates, calling attention to the group of inherited peripheral nervous system diseases is crucial to heightening the recognition, diagnosis, understanding, and management of CMT, which is thought to affect one in 2,500 Americans and 2.6 million people worldwide.
To help spread awareness and raise funds for support programming and scientific investigations, the Hereditary Neuropathy Foundation (HNF) is offering a host of activities with the theme “Know CMT.”
The organization maintains it envisions a world where everyone knows what CMT is, whether they have CMT and what type, what the next best steps are, and how to participate in clinical trials and other research endeavors.
To that end, the organization is asking people to share its content and resources, visit its “CMT Genie” for genetic testing support, connect with its CMT Centers of Excellence, and join the Global Registry for Inherited Neuropathies (GRIN), which collects clinical and genetic information from those with all forms of CMT and related inherited neuropathies.
HNF is also offering a Facebook photo frame and a downloadable “RoundUp” app that allows people to donate their change to CMT research by automatically rounding up purchases to the next dollar.
On Sept. 20, the organization will host a CMT Helicopter Ball Drop, a live Facebook event hosted by Jamal Hill, a CMT advocate and paralympic swimmer, to raise funds and awareness. During the event, hundreds of numbered golf balls with be dropped from the CMT Chopper over the Tijeras Creek Golf Club.
The owner of the winning ball will receive 20% of funds raised, up to $2,500. Remaining proceeds will go to HNF research involving gene therapy, repurposing approved treatments for CMT patients, histone deacetylase 6 (HDAC6) enzyme inhibitors, and the CMT Mobile App, which helps patients better interact with their healthcare team and participate in clinical research from home.
Then there’s the “Band Together for CMT” classes, to be held in Sept. 12, 20, 25, and 28. The virtual classes, which are suitable for all skill and disability levels, use resistance bands to help patients build strength while boosting stamina, flexibility, and range of motion.
The organization is also offering, for a $10 donation, a wallet-sized neurotoxic drug card for patients to show to their healthcare provider when medications are prescribed. The aim is to ensure that people with CMT aren’t prescribed medicines that may worsen their neuropathy.
Meanwhile, the CMT Research Foundation is celebrating CMT “Action” Month by offering a new video series that explores “often-avoided questions” about Charcot-Marie Tooth and includes topics such as therapy development and the federal treatment approval process.
The organization also is providing ways supporters can speed up the therapy development process, including by contributing funds to research, visiting a CMT clinical center, enrolling in a patient registry, spreading the word about why CMT is a disorder worth funding, and helping friends and family understand why finding treatments for CMT is so important.
“September is CMT Awareness Month, a time to educate the world about CMT,” the foundation states on the event webpage. “But awareness isn’t enough to stop CMT. To end this insidious disease during our lifetime, and for every future generation, we must turn awareness into action.”