Every year, I travel from my home in Connecticut to Washington, D.C. – not for vacation, not for business, but for something deeply personal: to fight for families affected by Alzheimer’s disease.

I was one of more than 1,100 volunteers from all 50 states who gathered at the 2025 Alzheimer’s Impact Movement (AIM) Advocacy Forum. Hosted by the Alzheimer’s Association’s advocacy arm, the forum is an annual three-day event that brings together people like me – people with personal stories, loved ones lost, and a deep drive to make change.

This year, our Connecticut delegation included ten passionate advocates from across the state. On the final day of the forum, we went to Capitol Hill and met with our Connecticut members of Congress to share our experiences and ask for their support.

I advocate in memory of my mother, who died of younger-onset Alzheimer’s in 2018 at just 65 years old. She was vibrant, funny, and brilliant — the kind of person who lit up a room. But Alzheimer’s slowly stole her from us, piece by piece. I watched my mother, once fiercely independent, lose her words, her ability to care for herself and eventually, her life. The grief of that loss never fully fades. But I’ve learned to channel it into purpose.

Each year, I return to D.C. not just for her – but for the millions of Americans living with Alzheimer’s and other dementias, and the caregivers who carry so much of the burden, often in silence. In Connecticut alone, over 80,000 people are living with Alzheimer’s, and more than 100,000 unpaid caregivers provide support to loved ones. This is a public health crisis hiding in plain sight.

At the forum, we asked our members of Congress to support increased research funding through the National Institutes of Health, continued funding for the BOLD Infrastructure for Alzheimer’s Act, protections for Medicaid coverage, and access to affordable and timely diagnostic tools — including coverage for biomarker testing. We also advocated for better education and training for primary care providers, who are often the first point of contact for families facing a dementia diagnosis.

This is emotional work and not always easy. I’ve spent years sharing my story, following up with offices, and posting about advocacy on social media. I keep going because I know the silence around this disease is part of what allows it to persist.

If I’ve learned anything, it’s that the most powerful change doesn’t always start in headlines or press conferences. It starts in living rooms and support groups, in the quiet hands of caregivers, and in stories shared on Capitol Hill. Advocacy is often invisible labor – but that doesn’t make it less important.

I hope Connecticut’s lawmakers continue to lead the way in this fight. Alzheimer’s doesn’t care who you are, where you live, or what party you belong to. It steals futures and fractures families – and the time to act is now.

Until there’s a cure, we need compassion. We need resources. And we need to keep showing up.

Erin Mahoney is an Alzheimer’s advocate from Avon.