Family Donates $1M to CMT Research Foundation’s ENDGAME Campaign

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Michele and Kent Stahl and their family have donated $1 million to the CMT Research Foundation (CMTRF).

The donation goes to support CMTRF’s ENDGAME campaign, which aims to put an end to Charcot-Marie-Tooth disease type 1A (CMT1A), the most common subtype of CMT. Since ENDGAME launched in September, the effort has raised more than $4.6 million from people in the CMT community.

“We knew that families were interested in being a part of the solution; we set a 3-year goal to raise $10 million. To raise almost half in just a few weeks, ignited by the momentum started by the Stahl family, exceeded every expectation,” Peter deSilva, CMTRF board member and chair of the ENDGAME campaign, said in a press release.

The CMTRF is working to build a pipeline of projects to fund. According to the foundation, research proposals have been discussed with investigators worldwide, and “the scientific momentum is palpable.”

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“We’ve started a movement to end CMT1A,” said Michele Stahl. “That’s exactly what we hope our gift would do.”

The Stahl’s son, Austin, started to experience difficulty with balance and walking when he was a child. The family spent years in search of answers before Austin finally was diagnosed with CMT1A at the age of 16.

“We spent seven years searching for an answer,” Michele Stahl said. “We visited the best doctors in Boston, including neurologists at Brigham Women’s Hospital and Massachusetts General Hospital. It wasn’t until we found one doctor who suspected it may be CMT and ordered a genetic test. After years of searching, we finally had a diagnosis.”

Getting the diagnosis was an important step. But then the Stahls learned that there are no treatments that can slow or stop the progression of CMT. That’s in contrast to another neurological condition, multiple sclerosis, which has more than a dozen approved treatments.

“To think we could have had a cure 10 years ago with appropriate funding is disheartening,” said Kent Stahl, who worked as an investor for more than 30 years. “Our son, like the millions of others afflicted with CMT, has done everything in his power to keep his body in peak physical condition to lessen the deterioration. Now it is our turn to act and become part of the legacy that ends CMT.”

When the CMTRF launched in 2018, the Stahls made a donation to help fund two projects for CMT1A.

“Susan Ruediger, one of CMTRF’s co-founders, was the first person aside from my son who I met who had CMT. When we met in my living room I was comforted. She showed me her leg braces to help her walk and I heard her story about living a full and productive life. But I also saw how much she struggled,” Michele Stahl said. “I saw what the future held for Austin and I knew that, together, we had to do better.”

Helping to fund initial work on research for CMT treatments was exciting for the Stahls, and when those projects went on to garner additional funding from private investments and the National Institutes of Health (NIH), the family was thrilled to know they were helping to make a difference.

“I remember when Susan told me that DTx Pharma raised $100 million on the heels of the CMT1A program initially funded by our donations. My eyebrows went up — I then knew that I had to jumpstart more projects like these to increase the likelihood of developing successful treatments for Austin,” Kent Stahl said.

“A second research project funded by our donations also just received private equity investment. It was based in part on Dr. Scott Harper’s doctoral thesis in 2006, but the research never advanced due to lack of funding until CMTRF’s investment in 2019,” he added.

CMT affects one in 2,500 people, which is about the same prevalence as multiple sclerosis, including 150,000 Americans and nearly 3 million people worldwide.