Because Six Generations are Too Many
Susan Ruediger comes from a family with six generations of CMT. She has watched her grandmother, mother, aunts and uncles physically deteriorate over time. She knew that weak, bony hands ran in her family, but that running and physical strength did not. She didn’t know why until her mother told her at age 16 about the Ruediger family’s devastating CMT legacy.
When Susan and her husband started thinking about starting a family, they knew she had a 50% chance of passing CMT on to her children. When she delivered her first child, Susan was not going to allow the physical pain and emotional turmoil of CMT to continue for another generation. She knew something had to change.
Susan spent the next 10 years learning everything about CMT and has become one of the nation’s leading non-medical experts on the condition.
Because One Generation is Too Many
When he was 15 years old Patrick Livney broke his ankle while playing soccer. After rehabilitation, he broke it again in the same place something that’s highly unusual. His family scheduled medical appointments in the US and Europe to investigate, but it was his family doctor who finally diagnosed Patrick’s CMT. To this day, Patrick has never forgotten what two doctors later told him about CMT. One, a renowned neurologist in New York told him that Patrick would be wheelchair-bound by age 30. And the second, a doctor in Luxembourg advised, “Use your brain and enjoy life. You don’t need to hit or kick a ball to be successful.”
Unlike most patients with CMT, there was no history of the condition in his family. Patrick eventually learned that his genes spontaneously mutated upon conception and type 2 CMT was result. Well beyond 30, Patrick is not wheelchair-bound and in fact, plays a mean round of golf.
The CMT Research Foundation
We started the CMT Research Foundation in 2018 to fund research that leads to the development of treatments and cures for CMT. The CMT Research Foundation is unlike any other CMT organization. We have one single mission: to raise funds to invest in science that will lead to treatments and cures for CMT. Our impact goes beyond simply making investments. We identify key problems or gaps in progress to a cure, then aggressively find partners to attack the problems. We introduce CMT to the greater drug development community, something that has rapidly Increased the number of experts working to solve the disease.
Together, we’ve built a robust board of directors, almost all who have loved ones with CMT. The Scientific Advisory Board includes experts not only in CMT but in drug development and commercialization. They analyze each research project with a keen focus on its ability to lead to a drug that is approvable for and available to patients.
As we continue to watch our bodies deteriorate, we also have hope — hope that Susan’s family’s legacy will end and hope that no family like Patrick’s will have to endure CMT.
We Invite You to Join Us
Please join us on the quest to develop treatments for CMT during our lifetime, so that one day no one’s life is limited by CMT and no child is born with the disease. Sign up for our email list to be the first to know about the latest CMT research and how you can get involved.