We are participating in the 2024 Boston Walk 4 CMT on September 29th in Lexington, MA, and I am asking you to support us.

This cause is personal to us...very personal. My younger son, Evan, and I have CMT Type 1A. We live with CMT everyday and are constantly reminded of the impact this disease has on ourselves, and others.

CMT is an inheritable peripheral neuropathy that affects about 1 in 2,500 people. There are over 100 types of CMT. People with CMT suffer lifelong progressive muscle weakness and atrophy of the arms and legs, progressive sensory loss, and CMT can affect other parts of the body. This leads to problems with balance, walking, hand use, and more. There currently is no treatment or cure for this debilitating and often overlooked disease.

Evan and I are am some of the more fortunate people with CMT since we are able to do so many things many people with CMT cannot. We can walk, run (albeit very slowly), ski, button our clothes, use utensils, grip items. We do live with chronic pain and the disease takes its toll on our bodies. Evan and I have also chosen to become involved in the CMT community and do something to help people with CMT. Evan is on the CMTA Youth Council, has attended Camp Footprint (a free camp for kids with CMT), and was most recently a counselor this year, inspiring other kids with CMT. Heidi and I have been supporters of the organization, and I joined the CMTA Board of Directors a couple of years ago. Max has walked, raised money and been a staunch supporter of his brother and for the cause.

There is so much that can be done, and much progress has been made. The CMTA is the leading organization fighting CMT from a research perspective, patient support and advocacy. The research pipeline is promising and I have hope for the future. Connecting patients with clinics, sending kids with CMT to camp and advocating for patients with CMT are all crucial efforts. 

I am asking you to support our walk and donate to this wonderful organization, and to help so many people living with this disabling disease.

We truly appreciate any gift you can give, and are thanking you in advance.

Warmly,

Craig (and Evan, Heidi and Max)