Atlanta resident Susan Ruediger had just completed a successful virtual convention last weekend, raising $4.3 million for her three-year-old research non-profit seeking a cure for Charcot-Marie-Tooth Disease (CMT), a degenerative nerve condition affecting 3 million people worldwide.
On Tuesday morning, she heard country star and Newnan native Alan Jackson reveal on the “Today” show that he has had CMT for a decade and it was impacting his ability to perform live.
“I felt sorry for him,” said Ruediger, who runs the CMT Research Foundation. “But I am grateful he has disclosed this because so few people have ever heard of it.”
Ruediger, 50, attended Clemson University and remembers in the 1990s spending time on Lake Burton, where Jackson used to have a home. “You’d see his boat with the words ‘Way Down Yonder on the Chattahoochee’ on it,” she said, referencing Jackson’s hit 1993 song.
The Houston native and Brookhaven resident has had CMT since she was two years old. It typically causes balance issues and makes it difficult to walk. While it is not life threatening and doesn’t impact life expectancy, there is no cure and no treatments beyond pain management.
She hopes her organization will help medical researchers find a cure for CMT and help Jackson as well.
For Ruediger herself, she said family didn’t tell her she had CMT until she was 17 because they wanted her to focus on the positive, not on the negative.
“I tripped all the time,” she said. “I was very unathletic. I was clumsy. I thought I was a dork. I felt a whole lot better when they told me.”
She now wears leg braces to keep from falling. “When Alan Jackson was talking about having difficulty standing at the microphone, I understood that,” she said. “I have to spend time behind a microphone as well for my job. I don’t know if I could run around a stage like he does for three hours.”
She said in 2018, she noticed that there were CMT groups that provided patient services, camps and education. But she saw a gap in research. “There was not enough money and not enough research and voices working on this,” she said. So she launched CMT Research Foundation in September 2018 to raise funds to incentivize medical researchers to study and find treatments and cures.
Ruediger, who has a background in teaching, corporate training and sales, said she has since raised about $9.6, an astounding figure for a start-up group this young.
The foundation’s most recent audited financial statements are through the end of 2019. At that point, the foundation had raised $2.5 million.
She now has a total of four employees including herself, with two based in Atlanta. They all work remotely.
Ruediger has worked with medical groups to find researchers whose specialties could help people with CMT such as James Dahlman, a Georgia Tech professor who specializes in nanoparticles. He is now working on a two-year CMT-related project. Her group has already funded 10 different medical projects with two making significant progress, Ruediger said.
The organization just begun a new $10 million fundraising campaign and is more than 40% there. Last weekend’s virtual convention drew 115 medical researchers from 20 countries.
Ruediger said she tries to keep a healthy body weight and mindset. “I want to be part of the solution,” she said. “I spent years ignoring it. Now I have a huge purpose in life.”
