Nov 28, 2022 - News

ALS fundraiser gains momentum in Nashville

Illustration of a sack of money with a medical cross symbol on it.

Illustration: Megan Robinson/Axios

Nashville-area advocates pushing to cure ALS, also known as Lou Gehrig's disease, are celebrating a watershed year marked by scientific advances and broad community support for more research.

The latest: An effort to create a dedicated research hub at Vanderbilt University Medical Center is running years ahead of schedule, thanks to grassroots philanthropy and support from the Tennessee state government.

  • The campaign, led by The LiveLikeLou Foundation, is less than $100,000 away from its phase-one goal of $3.5 million, according to foundation officials.
  • "We thought we would get there by 2025," LiveLikeLou Foundation executive director Wendy Faust tells Axios. "To be there today is really exciting."

Why it matters: Experts and advocates believe the groundswell of support could represent a gateway to meaningful new treatments for ALS, a debilitating and deadly neurodegenerative disease that robs people of their ability to move, speak and breathe.

  • Time is of the essence because patients typically live two to five years after their diagnosis.

What they're saying: Evan Campa, a local advocate who was diagnosed with ALS in 2018, and was a leading force in the push for more treatments and government support, frames the local fundraising effort as a potential game-changer.

  • "We're honored and proud to be part of this campaign," Campa tells Axios in a written statement. "We believe the campaign has charged forward because the community understands the moment — a treatment is around the corner if we keep pushing."

State of play: Dane Chetkovich, the chair of the neurology department at VUMC, tells Axios he is recruiting a scientist to lead the new lab who will "look at this disease with a different set of eyes and with a different set of tools that will allow us to unlock its mysteries."

  • Chetkovich compares the present-day battle against ALS to the fight against multiple sclerosis in the 1990s. He says that disease also seemed impenetrable until a rapid succession of discoveries quickly made it a chronic but treatable disease.

The bottom line: The same kind of progress is possible for ALS, he says.

  • "There's a lot of ground to cover," Chetkovich says. "We're really excited about this partnership. We know that we can make great strides forward."

What's next: Faust says the LiveLikeLou Foundation is interested in expanding its efforts with VUMC and other institutions as more money comes in. But maintaining momentum will be critical to that ambitious goal.

  • "It's not that it's not treatable or curable; it's that it's underfunded," Faust says.
  • "We're seeing a lot more movement in terms of federal and local advocacy and support. But it's not enough yet."

How to help: You can donate to the LiveLikeLou "It's a Whole New Ballgame for ALS" research campaign for VUMC here.


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