News & Stories

Why I Participate in ALS Research

Jackie Nauth

“My mom, Sandra Morgan, was diagnosed with sporadic ALS in 2008 and died in 2010. In 2014, her sister was diagnosed with ALS. I reached out to the facility that told my mom she did not have a known genetic mutation and found out that my mom had the C9ORF72 mutation. I am a planner who hates surprises, so I decided I wanted to know my gene status. 

When I received the results and discovered that I also had the C9ORF72 mutation, I was overwhelmed with emotions. I finally decided that if I had the risk of developing ALS, then something positive needed to come out of the situation. 

I participate in the PreFamilial ALS study out of the University of Miami. My hope is that my participation will help them learn more about ALS, whether or not I ever develop the disease. Even if my participation in ALS research doesn’t benefit me, I hope it can help others. I like that I can participate in this study while I am presymptomatic. If I do develop ALS, then I will be moved over the Familial ALS study. They can use my data whether I am symptomatic or not. I appreciate the information and care they provide me and I feel like I am doing something to fight against ALS. I will not surrender to this disease. I am fighting now, and will continue to fight if I develop this devastating disease of ALS.”

Navigating Familial ALS

Join our dedicated support group tailored specifically for individuals facing Familial ALS (FALS). If you’ve tested positive for the genetic mutation, suspect you may carry the ALS gene, or have family members affected by FALS, this group offers a space of understanding and solidarity.

When: 2nd Monday of every month, 6:00-7:30 pm
Where: Online via Zoom
Get the link at

Led by experienced ALS professionals, these meetings provide compassionate support, education, and opportunities for shared learning. Through discussions, guest speakers, and access to vital resources, we aim to empower individuals impacted by FALS.

For inquiries or further information, please contact Sue Bowes, MSW, LCSW, at 309-657-3488 or

Don’t navigate Familial ALS alone – join us in finding strength and support together.

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