GRAYSLAKE – Deb Paust of Grayslake doesn’t want other families to go through what her family went through.
Her husband, Tim, died of ALS, a progressive neurodegenerative disease also known as Lou Gehrig’s disease, in 2014.
She’s been telling her family’s story ever since. Tears are always part of that story.
“It’s a horrible disease. You’re forever changed from what you live through,” she said. “There’s no reason to try to cover [the tears] up because it’s so painful.
“It doesn’t just devastate the person who has it. This disease devastates everyone who knew and loved him. It felt so helpless. Everybody just felt so helpless. All they could do was wait for him to die. That’s the reason I do what I do.”
An official ALS Research Ambassador, Paust uses her voice to advocate for ALS clinical research and legislation to support clinical trials and increased funding.
A year after Tim’s death, she attended the Northeast Amyotrophic Lateral Sclerosis Consortium ALS Clinical Research Learning Institute as a member of the Skokie-based Les Turner ALS Foundation’s convoy.
Typically taking place in Florida, the two-day program educates attendees on clinical research and therapy development. Many who attend become ALS Research Ambassadors. For the first time in the institute’s history, the program was hosted by the Les Turner ALS Foundation this year. The virtual NEALS ALS Clinical Research Learning Institute took place Feb. 20-21.
“We saw this as an opportunity to really help people confidently navigate the disease. Part of confidently navigating the disease is through education,” said Lauren Webb, director of support services and education at the Les Turner ALS Foundation, which created the Les Turner ALS Center at Northwestern Medicine in 2014.
“For us, having [the institute] specifically in Chicago is important because it helps us as an organization position ourselves to be able to engage with the larger ALS community. We’re a small, but mighty, organization and we believe in a world free of ALS.”
ALS affects nerve cells in the brain and spinal cord and eventually leads to death. Experts predict an individual’s lifetime risk of acquiring ALS is about 1 in 300 by the age of 85. The average survival for someone affected by ALS is three to five years.
Raising awareness and advocacy are essential, organizers of the NEALS ALS Clinical Research Learning Institute said.
“Having this program in Chicago is amazing,” said Dr. Senda Ajroud-Driss, director of the ALS Center at Northwestern Medicine. “It’s a powerful program that could raise the profile of our local patients with ALS and push them on a bigger stage in a way.”
There are 380 ALS Research Ambassadors working to improve research opportunities, Webb said, and they’ve made immense strides.
Two ALS Research Ambassadors were behind the viral 2014 ALS Ice Bucket Challenge, which raised more than $200 million worldwide for ALS research.
Along with educating attendees, the NEALS ALS Clinical Research Learning Institute allows those who’ve been impacted by the disease to connect, Paust said. As someone who’s been a caregiver and lost a loved one to the disease, she was able to reach out to those going through what she went through.
“There’s this unwritten and unspoken bond between the ALS community,” she said. “I’ve found that I was really bringing hope to some of these families because they saw the other side of it, me trying to be productive and help change some things that need to be changed with this disease.”
Ambassadors play many roles. They fundraise, collaborate with companies and researchers to craft research questions and design patient-friendly protocols, and meet with members of Congress and regulators.
As an ambassador, Paust has advocated for ALS bills that support clinical trials and increased funding. She’s worked with the Food and Drug Administration on the ALS Drug Guidance document and has petitioned state and national representatives in Springfield and Washington, D.C., about advocacy efforts and appropriations for funding for ALS research.
In 2020, she visited 16 legislative offices, taking a sabbatical from her job to focus on her advocacy.
With her help, the ALS Disability Insurance Access Act passed earlier this year. The legislation had been in the works for more than10 years, Paust said.
“There were many people that put in so much time and effort,” she said. “I was fortunate to be on the back of it. … That was a really proud moment. I felt like this was really my calling, and if [the ALS Disability Insurance Access Act] didn’t pass, we would have to start over again with a new Congress.”
As an attendee of the NEALS ALS Clinical Research Learning Institute, which attracts the leading neurologists and researchers in the country, Paust said she feels part of the solution.
“Thankfully, there’s been a lot of progress, and there’s a lot of hope now, more hope than before,” she said. “I have a small role in it, and I’m just grateful to have some part in it. I think for many people advocating seems sort of intimidating, but you don’t have to know everything to become an advocate. The most important thing you can do is just tell your story.”