Taking the fight against Alzheimer’s to Capitol Hill

Earlier this month, a local woman traveled to Washington, D.C., to meet face to face with lawmakers and advocate for legislative action in the fight against Alzheimer's.  From June 1 through 3, Suzanne Koss was part of a national delegation that traveled to the capitol as part of this year’s Alzheimer’s Impact Movement (AIM) Advocacy Forum. Last week, we sat down with Koss to discuss her advocacy, her recent trip and how readers can get involved in the cause.

The AIM is an affiliate of the Alzheimer’s Association that “works to develop and advance policies to overcome Alzheimer’s disease through increased investment in research, enhanced care and improved support”. Each year, they host an Advocacy Forum where supporters from across the country visit D.C. to meet directly with representatives and ask them to support legislation that funds scientific studies, expands testing access and improves care and support for those suffering from Alzheimer’s.

Suzanne Koss has been advocating for the fight against Alzheimer’s since witnessing her mother’s five-year battle with the disease over twenty years ago. Every year since 2000, she and her family have taken part in the annual Walk to End Alzheimer’s, and Suzanne has served as a board member for the event in Wisconsin.

Koss’s continued advocacy led to her being invited to attend this year’s AIM Advocacy Forum which featured over 1,000 grassroots advocates from all 50 states taking part in over 500 meetings with members of congress and their staff. Koss was one of thirteen attendees from Wisconsin and attended meetings with Senators Tammy Baldwin and Ron Johnson as well as Wisconsin 8th District Congressman Tony Wied. 

In these meetings, she and her fellow delegates advised the lawmakers to support two pieces of legislation as well as further invest in Alzheimer’s research. The Alzheimer’s Screening and Prevention (ASAP) Act would ensure Medicare patients could receive access to a simple blood test that can detect Alzheimer’s before symptoms appear. The next piece of legislation–The Accelerating Access to Dementia & Alzheimer’s Provider Training (AADAPT) Act–would create and expand structured and virtual training programs for primary care healthcare workers, especially those in rural and underserved areas.

The advocates also urged their representatives to increase funding for Alzheimer’s research at the National Institutes of Health (NIH) by $187.2 million as well as add $41.5 million to the Centers for Disease Control’s (CDC) budget for the strengthening of the public health infrastructure necessary to respond to the growing impact of the disease.

Koss says she felt “hopeful” after her experience in D.C., and she “learned that there is power in numbers” after seeing 1,000 people all advocating for the same cause. She felt the representatives she met with “really listened” and was grateful they took the time to meet with her and her fellow advocates.

Back at home, Koss is continuing her advocacy and making efforts to bring the campaign out to more outlying areas. She has hosted events in the Kewaunee area and is working with OneDenmark to bring similar initiatives to the new community center when it is completed. Advocates will be walking as part of this year’s Denmark Lions Parade in July and anyone wishing to join them is asked to reach out to Suzanne at skoss123@gmail.com.

The 2026 Green Bay Walk to End Alzheimer’s will be held on Saturday, September 26 in Green Bay centered around City Deck. This year, music for the event will be provided by members of the Denmark High School Band. Anyone interested in taking part in the walk is encouraged to contact Cari Josephson at 920-609-1342. Koss says she would also love to see some local businesses join in supporting the event by becoming sponsors.

Koss explains anyone can get involved in the fight against Alzheimer’s by simply calling or writing their representatives at both the state and federal level, telling us, “Advocacy doesn’t take a lot of time…The more people that do it, the louder our voice will be.”