A Legacy Gift with Lasting Impact
“Strong, courageous, independent, stubborn, determined, and remarkable” are words Dr. Mary Wendel uses to describe her brother James “Jim” Wendel, who passed away in 2020 after a lifelong struggle with Charcot-Marie-Tooth disease, an inherited neurological disorder.
Charcot-Marie-Tooth (CMT), named for the three physicians who first described the condition, is a group of disorders that cause nerve damage, primarily to peripheral nerves controlling muscles in the hands, arms, legs, and feet. The damage leads to a progressive loss of function and sensation, making it difficult to walk. CMT affects fewer than 200,000 people in the United States.
Jim Wendel suffered both physically and emotionally throughout his nearly 68 years. Yet he pushed himself to enjoy life to the fullest, undeterred by his disability. As a teen, he tried out for his high school soccer team, knowing well that his inability to run would prevent him from making the team but allow him to participate as the team manager instead. He learned how to ski and skate wearing leg braces. He became an accomplished musician and traveled throughout Europe playing baritone horn with youth orchestras during his young adult years. He was also a strong singer until his disease made breathing difficult.
Professionally, Jim followed the path of his father and brother and pursued a career as a civil engineer, and he used his knowledge to design gadgets for his home that allowed him to live independently. He settled in Maine and became a well-known and well-respected member of his local community. He made many friends through his hobbies, particularly rebuilding and racing cars. After his death, his sister was astounded that so many of his friends contacted her to buy his collection of spare automotive parts, which had once filled an entire barn.
For decades, Jim had talked of leaving a legacy. He did his own searching to find a respected nonprofit entity with a mission to advance medical research for the benefit of humanity. He chose the FNIH for its unique connection to the National Institutes of Health (NIH) and its ability to direct the funds to a project that would positively affect others living with his rare disease.
“Jim lived modestly and was single-minded in his commitment to donate to an organization advancing medical research,” said Mary Wendel. “He wanted his support to go toward research helping children and young adults avoid going through what he had to go through. I believe he was at peace [when he passed] knowing he would make a difference through his bequest.”
His substantial bequest through the FNIH is supporting the work of Dr. Carsten Bönnemann, a pediatric neurologist at NIH’s National Institute of Neurological Disorders and Stroke (NINDS). Dr. Bönnemann’s research focuses on discovering the genetic causes of early onset neurological disorders in young children and developing precision therapies that target the defective genes.
During Jim’s lifetime, advancements in neuromuscular disease focused on improved diagnostics and symptom management. Jim himself underwent corrective orthopedic surgery and physical therapy that ultimately did not provide long-lasting benefit. According to Dr. Bönnemann, the last few years have seen the dawn of a new era for neuromuscular disorders that has now led to the development of first treatments directed at the genetic causation of the diseases. Unfortunately, the high potential of these treatments remains largely unexplored, because for many of these individually very rare disorders the relatively few affected patients are unlikely to attract interest from drug developers.
The legacy gift through the Estate of James T. Wendel will enable Dr. Bönnemann and his team of researchers at NINDS to take one subtype of congenital neuromuscular disease where a unique genetic mutation has already been identified and test a potential therapy for that specific condition. The hope is that findings for each precision genetic therapy will add to a growing toolbox that can be translated to other related genetic diseases and establish a precedent for successfully treating patients in a reasonable timeframe.
“For me as a physician and a translational scientist, it is particularly moving and inspiring that James expressively dedicated his estate to this purpose, knowing that the results from the research would not benefit himself but rather future generations of patients affected by neuromuscular disorders,” said Dr. Bönnemann, who never met Jim Wendel. “This donation is a truly remarkable legacy left by a courageous and deeply generous individual living with and ultimately succumbing to neuromuscular disease. My team and I feel a tremendous responsibility to honor this legacy with research that we hope will make a difference for future patients.”
The FNIH remains honored to be stewarding Jim’s legacy in partnership with the Estate of James T. Wendel and NINDS. For more information on legacy giving, please contact the FNIH Strategic Alliances and Advancement office at (301) 402-5343.