“There is more hope and more action happening right now within the ALS community than I ever thought I would see in my lifetime,” says Deb Paust of Grayslake, Illinois. “It is empowering to be a part of that change.”
When her husband, Tim, was diagnosed with ALS in 2012, along with caring for him, Deb knew she wanted to be involved in the fight against the disease. “I knew I wanted to do advocacy work,” Deb says, “and really make a positive change within the ALS community.” And the Les Turner ALS Foundation was happy to help empower Deb on her mission.
One year after Tim passed away, Deb attended the 2015 NEALS ALS Clinical Research Learning Institute (CRLI) as a member of the Les Turner ALS Foundation’s convoy. This annual two-day program is dedicated to educating attendees on clinical research and therapy development and empowering this group to be advocates for ALS clinical research.
“You get so much out of the program,” says Deb. “You not only have the opportunity to connect with your peers, but get to learn from the leading ALS clinicians around the country, who provide advocacy tips and advice on the best ways to get involved.”
Since becoming an ALS Research Ambassador, Deb has been able to influence and improve the ALS research process by advocating for ALS bills that support clinical trials and their increased funding, working with the FDA on the ALS Drug Guidance document and helping to pass the ALS Disability Insurance Access Act earlier this year.
She has also petitioned her state and national representatives in Springfield and Washington, D.C., about advocacy efforts and appropriations for funding for ALS research. Deb asks, “Who better to hear from than those whose lives have been affected by ALS?”
But for Deb, one of the most rewarding parts of the program are the people she has met along the way. “The goal is to eradicate this disease,” says Deb. “But in the meantime, there is so much we can do to care and advocate for those who are going through this journey.”
This year, the Les Turner ALS Foundation is hosting its first-ever Chicago Virtual NEALS ALS Clinical Research Learning Institute (CRLI) from February 20-21. Patients, caregivers, and surviving family members are encouraged to apply!