Advocacy in Action: Jodi and Shannon Push for the HEALTHY BRAINS Act

After caring for loved ones with multiple system atrophy (MSA), Jodi O’Toole and Shannon Grant are advocating for legislative change. Here, they share in their own words how they're turning grief into action.

Jodi O’Toole, Wisconsin

“On December 24, 2024, my husband of 32 years, Ron O’Toole, passed away after battling MSA. Ron was 58 years old. The proper diagnosis took many years of trials and tribulations and a physical, emotional and financial toll on Ron, me and our four children. MSA is often misdiagnosed as Parkinson’s Disease. Unfortunately, it progresses rapidly. There is no cure or current disease modifying medications.

Ron lost everything in his fight, even his voice! As I try to find purpose in my grief, I find that telling his story has led me to try to help others struggling with MSA and their families.”

Shannon Grant, Illinois

“My beautiful mom, Kim O'Malley, passed away on July 15, 2026, after an 18-month battle with MSA. In the beginning, there were days when she couldn't get out of bed on her own and toward the end, days where she couldn't even hold her phone. It is unbearable to watch and so I advocate for her and for everyone who has lost their life to this devastating disease. I hope that by sharing her story and raising awareness, we can help push for better research, better treatments, and ultimately, hope for those who are diagnosed tomorrow.”

Stronger Together

Jodi and Shannon now work together to advance state and federal legislation for people affected by MSA. Jodi shares: “A mutual friend introduced me to Kim O’Malley and her daughter Shannon Grant. There is comfort in numbers, and we can now take our own personal tragedies and grief and turn it into advocacy work. Together, we can support each other and work towards finding a cure for MSA and other neurodegenerative diseases and continue to find ways to better support those living with these diseases in our community.

For example, alongside CurePSP, we are advocating for the HEALTHY BRAINS Act that is currently in Congress. The bill would fund and coordinate federal research to investigate the impact of environmental factors on neurodegenerative disease development. We have been meeting with federal, state and local officials to spread awareness about MSA and advocate for the bill so that we can start having more answers than questions about these diseases. We even went on our local news station to talk about MSA and the bill! Please click here to let your legislators know that you care about the HEALTHY BRAINS Act.”

To learn more about getting involved in legislative advocacy, email advocacy@curepsp.org with “Ready to Advocate” in the subject line.