On September 29, we are participating in the 2024 Boston Walk & Cycle 4 CMT to raise awareness and funding for the Charcot-Marie-Tooth Association (CMTA). We would love to have you at the Lexington Visitors Center on September 29 from 9 - 12 to either walk or cycle with us. 

Many of you are already familiar with my story, but I’d like to share a little bit about why I am raising money for the CMTA. After a lifetime of slips, trips and falls, I was diagnosed in 2021 with Charcot-Marie-Tooth disease (CMT) Type 1A which is caused by genetic mutations that lead to peripheral nerve damage. CMT is progressive and this peripheral nerve damage leads to increasing muscle weakness and numbness over time. In 2022, I was very excited to join a Phase 3 clinical trial testing a medication that was meant to stop CMT 1A’s progression. Unfortunately, the results from that trial did not show any clinical benefit, and it was cancelled in December 2023.  Currently, there is no available approved treatment to cure or to slow down the progression of CMT 1A or any other type of CMT.

The Charcot-Marie-Tooth Association (CMTA) is a non-profit organization that exists to support the development of new drugs to treat CMT, to improve the quality of life for the 3 million people worldwide with CMT, and, ultimately, to find cures for all types of CMT. This fall, I am fundraising to support the CMTA’s Strategy to Accelerate Research which is working to pinpoint the genetic causes for each type of CMT and to find researchers who can run experiments to identify promising treatments for these genetic causes. 

A donor has agreed to match the first $5,000 that our team raises. If you are not able to walk or cycle, please consider contributing to help us achieve our team goal of raising $10,000 this year. I hope you will join me in funding this critical research and patient advocacy!