Local family helping establish ALS research program at Vanderbilt Health
Evan Campa, a 41-year-old mother of two who lives in Nashville, was diagnosed in 2018 with amyotrophic lateral sclerosis, or ALS. Knowing that her disease will eventually rob her of her voice and mobility, Campa has started a blog to document her experience with this disease and spread awareness. Suffered by famous figures like Lou Gehrig and Stephen Hawking, ALS is the most common motor neuron disease in adults. At any given time in the United States, between 15,000 and 21,000 people are living with ALS. With no cure or significant treatments yet available, ALS is fatal for a majority of patients within three to five years of diagnosis. Campa, along with her husband Eben Cathey, and their two children — Mae, 7, and Reuben, 5 — are committed to doing whatever they can to help progress ALS research, helping find better treatment and solutions for those diagnosed with the disease. The family regularly travels so Campa can participate in clinical trials, and they have also teamed up with Vanderbilt University Medical Center and the LiveLikeLou Foundation, an ALS advocacy group, to establish an ALS science research program at VUMC.
“We’ve joined this effort because we want to do whatever we can to help further ALS in a positive direction toward treatment and cures and more hope for people,” Campa said.
“One thing we’re excited about with the effort to bring a research lab to VUMC is the idea that we’re going to be part of a team that is bringing new science to the conversation,” Cathey said. “We need so much more of that, and that’s where we want to put our energy. And whatever science unlocks a cure for ALS, it’s going to unlock something else in terms of other neurological disorders, whether it’s Parkinson’s or Alzheimer’s or Huntington’s. We view this as part of a larger effort to attack an under-funded group of diseases.”
“With vital help from our friends and benefactors, we’re out to place VUMC’s exceptional basic neuroscience resources more fully in the service of solving this truly devastating illness,” said Dane Chetkovich, MD, PhD, Margaret and John Warner Professor and chair of the Department of Neurology. “Our Neuromuscular Disorders Clinic works with more than 130 ALS patients, but we’re unfortunately all too aware that at present there’s only so much we can do for them. This is a priority for VUMC, and now we have a philanthropic partner to help make it happen.”
“Today’s basic science efforts are tomorrow’s therapies,” said Suzanne Alexander, co-founder of LiveLikeLou with her husband, Neil, who died of ALS in 2015. “Because of efforts we’re undertaking with partners like VUMC and Dr. Chetkovich, we have a chance to change the storyline of this disease forever.”
Support from Vanderbilt Health donors like you is essential to programs such as this. So much of our research depends on the generosity of supporters to get started. Your gifts help fund groundbreaking research that turns into better outcomes for patients suffering complex illnesses.
"ALS has been around for 150 years, and we still can't answer important questions about this devastating disease," said LiveLikeLou Chairman W. L. Gray. "We need more world-class institutions and researchers in the fight for treatments and cures, and we are thrilled to help spur new discoveries right here in Nashville."
Learn More about the LiveLikeLou Foundation