From a young age, Rivka knew that there was something different about her compared to her three siblings; that difference was Charcot-Marie-Tooth (CMT) disease.

GROWING UP RARE  Rivka is a de novo case, meaning that her CMT was caused by a spontaneous genetic mutation, not a familial genetic inheritance. Being the only person in her family with a rare disease wasn’t easy on Rivka. Despite her parents’ best efforts to support her, Rivka rebelled against wearing AFOs and supportive sneakers, refusing to use a walker or aid to help her mobility. Through high school and into college, she tried her hardest to mask her symptoms, no matter how difficult it was. Fitting in with her able-bodied peers was her priority; Rivka didn’t want to feel left as an outsider.   

LIVING WITH CMT  In her final years at college, Rivka learned the importance of accepting accommodations for her disability; it allowed her to continue participating with her peers. “It wasn’t easy at first. I needed to know what I needed before I could ask for it. Over time, that got easier and it led to me finally accepting my disability more.” This acceptance led to living a life that is supportive of her CMT and its symptoms. Currently, Rivka goes to physical therapy twice a week, regularly visits the gym, and walks 10,000 steps a day. She also loves to hike with the help of her partner, friends, and family.  Her interest in healthy movement and spreading advocacy led Rivka to connect with the CMT Research Foundation for the 2024 Great Saunter.