ALS bill brings hope to Nashville families

After traveling for another round of experimental treatment for her ALS, Evan Campa arrived home to news she couldn't believe.

• A bill that could revolutionize the fight against ALS had passed the U.S. Senate and was headed to the president's desk.

Zoom out: Campa and her husband Eben Cathey spent about two years pleading with lawmakers to consider the bill. They learned of the sudden victory the moment their plane landed in Nashville Thursday.

• "It seemed unreal," Campa tells Axios. "Finally, our elected officials were moving with the urgency ALS demands and desperately needs."

Why it matters: Campa and Cathey are part of a coalition of patients and families who are leading a new charge against the debilitating and incurable neurodegenerative disease that robs people of their ability to move, speak and breathe.

• The passage of the ACT for ALS bill is a transformational victory for advocates pushing for a new era of discoveries and treatments.

State of play: The bill would devote hundreds of millions of federal dollars to support scientific research and make it easier for patients to get the latest treatments while they are still in the trial phase.

• Families fighting ALS played a critical role in advancing the bill, with support from the advocacy group I Am ALS.
• Lisa Quigley, former chief of staff for U.S. Rep. Jim Cooper, credited Campa and her family after the bill passed the Senate.
• "Their courage, forcefulness & savvy political skills — deployed while they battle ALS & raise their family — is remarkable," Quigley tweeted.

Campa and her allies are racing against time. Patients typically live 2-5 years after their diagnosis.

• "We have seen the end game and it's not pretty," Campa says. "We are fired up to change it."

The bottom line: The bill's success is a window into a world of new possibilities.

• "It was the first time in a long time that I've actually had hope," Allie Schmidt, another ALS patient-turned-advocate who lives in Nashville, tells Axios.
• "It gives hope to a lot of patients that previously might not have had any."

Campa, Schmidt and their families are also part of a separate grassroots effort to bring the battle for a cure to Vanderbilt University Medical Center.

Why it matters: Fundraising will be used to create a new ALS research program at VUMC, which already treats ALS patients.

• Neurology department chair Dane Chetkovich said the first-round funding goal of $3.5M, which is being raised in partnership with The LiveLikeLou Foundation, "will be consequential in the search for a cure for this most-cruel disease."
• Interviews are already underway for a program director.

The big picture: "My hope is that a breakthrough will be discovered right here in our backyard, and that it leads to a treatment that reaches patients fast," Campa says.

What they're saying: LiveLikeLou Foundation board chair W.L. Gray tells Axios support from Campa, Schmidt and their families is driving a paradigm shift around ALS.

• "There are no words that I can speak that give enough praise and value to the families that have the guts to get out and do this," Gray says. "It's absolutely necessary."

Working as an advocate while raising two young children and traveling for treatment is grueling, but Campa sees it as the only way to break through an unacceptable status quo.

• "It is a very vulnerable position to be in the public eye when dealing with something as devastating as ALS, but I believe it's the stories of people fighting ALS that move people to action, so I do it," Campa says.