News & Stories

See the latest news about CMT drug development and read stories from the CMT community that highlight why we must deliver treatments and cures during our lifetime.

CMT Patients & Families Need More Than Awareness

Aug 25, 2020 | Life with CMT, Press Releases

By: Susan Ruediger, CEO, CMT Research Foundation

As the fifth generation in my family to have CMT, the words Charcot-Marie-Tooth disease are as familiar to me as my own name. The harsh realities of its impact on my body are always with me, becoming increasingly difficult with each passing year.

Yet to most of the world, CMT is a blank stare — something they’ve never thought about or even heard of.

The truth is, I don’t want anyone to know about CMT. I don’t want another person — let alone another generation — to experience it.

As we prepare to celebrate CMT Awareness Month this September, we need more than awareness. We need action.

It has been more than 130 years since CMT was first discovered, yet there are still no treatments or cures. We started the CMT Research Foundation to change that. By taking action together, we will.

It’s easy to believe that a single action by one person is just a lone raindrop in a bucket. But combined together, our individual droplets create a tidal wave that will forever change our future.

What to Expect During CMT Action Month
During September, the CMT Research Foundation is taking action. Here are a few exciting things you can expect:

  • We’re launching a new video series that asks and answers the often-avoided questions about CMT, like why there aren’t treatments when we know so much about the disease and how patients and families can get involved in the drug development process.
  • We’re unveiling our new CMT Research Champions program, including a digital platform that allows you and your loved ones to accelerate CMT answers today, your way. You can help fund promising research that’s solely focused on CMT drug development by creating a personal fundraising page and rallying your friends and family to support you.
  • Thanks to the generosity of a selfless group of donors, every dollar donated to the CMT Research Foundation now through September 30 will be matched dollar for dollar up to $30,000 to invest in several critical research projects that could go unfunded this year without additional support. That means when you donate now, your contribution can have double the impact to speed treatments for CMT!

Let’s Get to Work
It’s time to turn awareness into action and hope into answers. If not us, then who? If not now, then when? Let’s get to work, team!