“If you don’t know much about ALS, Google it, and you will find that if truth is stranger than fiction then ALS is scarier than Texas Chainsaw Massacre.”
That’s from an affecting, unsparing and entertaining blog launched in June by Evan Campa, a 40-year-old mother of two who lives in Nashville, and who was diagnosed in 2018 with amyotrophic lateral sclerosis, or ALS, the most common motor neuron disease in adults.
“Come for the laughs, stay for the tears,” Campa writes in a Twitter post inviting readers to the blog.
At any given time in the United States, between 15,000 and 21,000 people are living with ALS, also known as Lou Gehrig’s disease (physicist Stephen Hawking was another famous person who had the disease).
With no cure or significant treatments yet available, ALS is fatal for a majority of patients within three to five years of diagnosis.
“We make a choice every day,” said Campa’s husband, Eben Cathey. “She makes the choice and then I follow — to live every single day the best that we can. And we will do that as long as we possibly can.”
Campa, who has a master’s degree from Vanderbilt University, works part-time at Vanderbilt Kennedy Center, in the Treatment and Research Institute for Autism Spectrum Disorders, which she joined eight years ago.
She appears clear-eyed about her situation and determined to make each day count for herself and her young family. Among ALS patients, those like Campa who raise public awareness find that the disease soon robs them of their voice and their mobility.
But Campa and Cathey don’t appear to be taking the ravages of ALS lying down. Amid traveling to participate in clinical trials, this articulate and photogenic couple — including their children, Mae, 6, and Reuben, 4 — have consented to place themselves and their story at the front of a campaign to establish an ALS basic science research program at Vanderbilt University Medical Center.
“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.”
For a start, VUMC and the LiveLikeLou Foundation, an ALS advocacy group, will each contribute $1.75 million to fund an ALS research directorship in the Department of Neurology. A candidate search, led by David Charles, MD, professor and vice-chair of Neurology, is underway. Some $2.3 of the initial $3.5 million goal has been raised to date.
“There’s every reason to expect that the fundraising efforts being undertaken in Middle Tennessee by the LiveLikeLou Foundation will be consequential in the search for a cure for this most cruel disease,” Chetkovich said.
While they still wish they’d never heard of ALS, Campa and Cathey are all in.
“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.”
LiveLikeLou operates in partnership with Phi Delta Theta, which was Lou Gehrig’s fraternity from his days as a student at Columbia University. Serving as chair of the LiveLikeLou Foundation is W.L. Gray, who a few years ago made Nashville his adopted home. Gray, himself a Phi Delt, is principal of Goodpasture Gray investment advisers, with offices in Houston and Nashville.
Area Phi Delt undergraduates and alumni are already supporting the campaign.
“ALS has been Phi Delta Theta’s primary cause for decades,” Gray said. “I am proud our brotherhood is still in the fight to find a cure and encouraged by alumni and undergraduate members that have already stepped up with support for our campaign to help fund an ALS basic science program at VUMC.”
Since its inception in 2012, LiveLikeLou has invested more than $4 million in ALS research, providing grants to institutions and career development awards to emerging ALS researchers across North America.
“Today’s basic science efforts are tomorrow’s therapies,” said Suzanne Alexander, co-founder of LiveLikeLou with her husband, Neil, also a Phi Delt, 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.”
Centered in Middle Tennessee, the campaign is recruiting community businesses, family foundations and local leaders. For more information, visit the campaign website or read Campa’s blog about living with ALS.