Apr 5, 2022 - News

Lee puts $1M toward ALS research

Photo illustration of Tennessee Governor Bill Lee with lines radiating from him.

Photo illustration: Allie Carl/Axios. Photo: Terry Wyatt/Getty Images

Gov. Bill Lee proposed a $1 million grant toward an ambitious fundraising campaign to launch an ALS research center at Vanderbilt University Medical Center.

  • The fundraising effort, a partnership between VUMC and the LiveLikeLou Foundation, will have $3.4 million toward its new $5 million goal after the proposed state funds are included.

Why it matters: A new research center would place VUMC at the vanguard of the global effort to treat and cure the mysterious and deadly disease.

Zoom in: Grassroots activists, primarily people diagnosed with ALS and their family members, spearheaded the fundraising drive for the nonprofit LiveLikeLou.

  • "We are so grateful that Gov. Lee has made ending ALS a priority for Tennessee," Nashville ALS advocate Evan Campa, who was diagnosed with the disease in 2018, tells Axios. "The team that has come together in support of an ALS research center at VUMC is absolutely incredible and a perfect example of how we're going to end ALS — together."
  • "The support from the state means everything to me and my family."

Context: Congress passed a law last year to cut regulatory red tape and jumpstart ALS research with $100 million in annual funding for the next several years.

  • The $1 million proposed by Lee as part of his amended budget still must be approved by the legislature.

What they're saying: A spokesperson for Lee acknowledged the "great deal of pain" ALS causes for families across Tennessee in explaining why the administration committed the funding.

  • "While we know government is not the answer to our greatest challenges, thoughtful public-private partnerships can make a huge difference, and the governor is proud to propose support for an organization at the forefront of this fight," spokesperson Casey Black tells Axios.

What's next: Thanks to the fundraising success, which includes $600,000 in private donations through the foundation, VUMC has already begun recruiting a translational scientist to serve as the new tenure-track director of ALS research.

  • VUMC also has institutional commitments for the research center with laboratory space and support staff. The university will be able to leverage its existing capabilities in imaging, genomics and drug discovery.
  • "We are excited by the prospect of advancing ALS research and improving the outlook for those affected by this terrible disease," Dane Chetkovich, chair of the department of neurology, tells Axios.
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