I’ve been doing the March of Dimes walk since 1993, and hopefully I’ll begin another 27-year streak next year, but… it’s canceled for this year and I’m not sure I’ll even get into Manhattan to do the “improvised” walk I did the past couple of years.
(Getting there means spending 2 hours in a too-crowded train, and I want to be around to start my new 27-year streak next year)
My son and his girlfriend are doing a bike trip for Charcot-Marie-Tooth at the end of this month. Since CIDU won’t be raising money for MoD this year, I was hoping we could shift some of our support over to CMT.
(I actually had elaborate plans to do walks for both MoD and CMT on the same day, but then 2020 happened)
Since my son’s an engineer working for a pharmaceutical company, I’ll let him explain further (and don’t worry, this will be the first and last time I post the full version)
As you may be aware, my girlfriend Mary Cate was born with Charcot-Marie-Tooth, a rare degenerative neurological disease with no treatment or cure. For the past three years, we have participated in Cycle 4 CMT, a ride in Vermont that raises funds for CMT research. Cycle 4 CMT is one of the largest CMT fundraising events in the world and has raised over $1,000,000 in six years. This is a really exciting time for CMT research: CMT is a genetic disease caused by a single mutation, and brand-new therapeutic models such as gene therapy and antisense oligomers have been proven successful in other diseases of this type. It may not be very difficult to transfer these approaches to CMT.
But CMT is a rare disease, and Mary Cate’s type, CMT4C, is even rarer. Thus, for-profit companies are unlikely to get involved until some of the costly early-stage work is done, and that’s where your donations come in! The CMT Association is actively funding an exploratory gene therapy for CMT4C developed by Dr. Kleopas Kleopa in Cyprus, which could eventually become commercialized.
This is a difficult year for everyone. The official in-person event is canceled this year in favor of a virtual event, but we are still going to Vermont with friends to do a ride and raise money and awareness. There are many worthy causes to donate to this year, and there’s less money to go around, but we ask that if you do have something to spare after maxing out your campaign contributions, please consider donating to our virtual ride! Fundraising will be a real struggle this year since the in-person events are all canceled, so your donation will make a big difference.