If you are interested in learning about CMT or are even a little curious, this article will help to shed some light on this rare disease.
You are invited by HNF-CURE to join the CMT Fundraising Team. You can help people living with Charcot-Marie-Tooth disease, especially during September’s CMT Awareness month.
What is CMT Disease?
The National Institute of Health defines CMT as a genetic, neurological disorder. The disease is named after the three doctors who discovered it in the year 1886. Although there is no cure, CMT can be managed through supportive therapy.
Ongoing Research
CMT causes damage to the peripheral nerves in the body. The damaged nerves are prevented from relaying sensory information from the limbs to the spinal cord and the brain.
While researchers are looking for proteins and mutant genes that cause CMT subtypes, other researchers are concentrating on reversing the damage. Studies are also being conducted on procedures that will slow nerve degeneration and muscle atrophy.
The CMT Fitness Program
The Hereditary Neuropathy Foundation (HNF) and Team CMT partnered in 2007. CMT’s founder Chris Wodke is a CMT patient and an advocate of exercising. Chris encourages patients to wear the Team CMT tee shirt in an effort to bring awareness and raise money for research.
Chris was invited to run in the Boston Marathon Mobility Impaired Division in 2012. Chris says that she was honored and overjoyed. Especially that it had been a dream she felt was no longer within her reach.
In 1995 Allison Moore, the founder of HNF, could not finish the NYC Marathon because of a diagnosis of cancer plus severe CMT. But twenty-three years later, in 2018, she walked the New York City Marathon. No one said it would be easy. In fact, Allison said it was agony. She almost gave up, but the thought of supporting the CMT community and contributing to a cure for the disease kept her going. She reached the finish line nine hours later.
Allison wanted her nine-hour walk to prove to other patients that there is always hope.
If readers would like to tell their stories and help to spread awareness, please contact [email protected].
CMT wallet cards, tee shirts, and kits may be purchased at: https://www.hnf-cure.org/cmt-awareness-month/
