Each month, we feature an advocate who engages with policymakers to ensure priorities that improve the lives of people impacted by Alzheimer’s and all other dementia remain top-of-mind in Congress. This month, we’re featuring each of the advocates who received special recognition during the 2024 AIM Advocacy Forum. 

Advocate of the Year: Sue Wronsky

 

In 1991, Sue Wronsky’s mother, Lynn, was diagnosed with younger onset Alzheimer’s disease.

“Dad saw the effects of this disease each and every day. Dad understood the hardship of watching his beloved wife slip away,” said Sue. “So being a dedicated retired Lt. Col., Dad played the hand he was dealt. He became one of the most effective advocates in the Central NY Chapter, writing countless letters to the editor and to his elected officials, riding the bus from Syracuse to Albany once a year for State Advocacy Day (with Mom in tow,) and even joining me here one year at Forum. After Mom passed Dad was asked to join the Chapter’s Board of Directors.”

As an Alzheimer’s Association Ambassador, a Walk to End Alzheimer’s and Longest Day participant, and an AIM Leadership Society member, Sue has followed in her dad’s footsteps and distinguished herself as a true champion for our mission. Last year, she participated in the Maryland State Advocacy Day, the AIM Advocacy Forum, our Health and Human Services (HHS) Rally for Access in Washington, D.C., and she showed up for multiple hearings to show support for access to Food and Drug Administration (FDA)-approved treatments. 

Not only did she attend the hearings, in July she testified before the House Energy and Commerce Committee. She has personally advocated before the White House on behalf of our community on the importance of ensuring affordable access to new treatments. 

“2024 marks my twentieth year of taking up my father’s mantle as an advocate,” said Sue. “We may not all be experts in the field, but we are experts in our own stories. We must continue to use our voices to tell those stories. If not us, then who?”

Advocate of the Year: Kanada Yazbek

 

Since long before she was diagnosed with mild cognitive impairment (MCI), Kanada Yazbek has been a dedicated volunteer with the Alzheimer’s Association. Initially driven to volunteer in honor of her many family members diagnosed with Alzheimer’s, she was often at Association events, raising funds and awareness. 

“I am grateful I became involved with the Alzheimer’s Association when my family members were on this journey,” said Kanada. “I found practical support, people who understood this disease, and a community.”

“When I was diagnosed with early-onset Alzheimer’s at age 40, nearly 10 ten years ago, I was even more grateful that the Association was in my life,” said Kanada. “Where I had previously found a community, I now found a home.”

As the Ambassador to Congressman Tom Emmer (R-Minn.), Kanada has built a strong relationship with him and his office. At countless town halls, district meetings, and in Washington, D.C., Kanada has passionately shared her story. 

“Last year, when new treatments were introduced, treatments that could profoundly change my life and give me more time, I thought: ‘This is a new day! Finally, there are answers for millions of us living with this disease!’” said Kanada. “However, when CMS initially denied coverage for these medications, the voice I had developed became a roar. No one was going to deny me or anyone I loved living with this disease a treatment that could help. I knew that life as an Alzheimer’s Association advocate had become my life’s passion and purpose.”

ACT Team: NY-15

 

Each year, the Alzheimer’s Congressional Team of the Year is awarded to a team who exemplifies what it means to be Alzheimer’s advocates. This year we honored the team from New York’s fifteenth congressional district including: Evelyn Alvarez, Margaret Alexander and Dalma Riquelme. 

All three team members bring the perspective of being caregivers for their mothers to their advocacy. 

“Our mothers have had an influential impact on our lives and having to see them slip away mentally and physically has been an emotional roller coaster for us,” they said. “It is that emotional experience that has brought us together as advocates.”

They’ve made impressive progress working with Congressman Ritchie Torres (D-N.Y.) and his staff to take action to improve the lives of people impacted by dementia. Congressman Torres has cosponsored key legislative priorities and signed onto letters of support urging CMS coverage of FDA-approved treatments. 

Because of their strong relationship with his office, the team was invited to attend his town hall with Health and Human Services Secretary Xavier Becerra in June 2023, at the height of our efforts to demand Medicare coverage of treatments. 

During the meeting, Dalma eloquently spoke about the importance of breakthrough treatments, thanked Congressman Torres for his support, and urged the Secretary to ensure access without undue burden on individuals or providers. 

Over the past year, they rallied in New York, posted on social media, and shared their stories in the press.

“Through advocacy we have become the voices for our mothers and all other families suffering through this disease,” they said. “We may not have the power to end the progression of the disease in our mothers, but what is in our power is being the voice of our mothers.”

Young Advocate of the Year: Matt Katawicz

 

Matt Katawicz has been volunteering for the Alzheimer’s Association since he was a teenager in Northern California. For nearly a decade, wherever his life has taken him, one thing has been constant — his commitment to the cause.

“When my Grandma Phyllis was diagnosed with Alzheimer’s when I was in high school, there was no hope,” said Matt. “There was only accepting that her decline was inevitable, that the times of her creating a warm and beautiful home, giving the best hugs, making her scrumptious zucchini bread, those days were numbered. And that’s why I started volunteering for the Alzheimer’s Association, first with the Walk to End Alzheimer’s, and then as an advocate, being the voice that my grandmother didn’t have.”

In June 2016, Matt participated in his first California State Advocacy Day. And then he joined advocacy teams for Representatives Adam Schiff and Katie Porter. 

After building strong relationships with his California delegation, Matt moved to Washington, D.C. and quickly signed up for the Alzheimer’s Congressional Team for Delegate Eleanor Holmes Norton. 

Matt has participated in district meetings, coffees with congress and multiple Advocacy Forums. Last year, after Rallying at the White House, he showed up on Capitol Hill time and time again, helping to ensure a strong purple presence for committee hearings focused on access to FDA-approved Alzheimer’s treatments. 

“I shared on an advocacy call last summer that the staff and volunteers of the Alzheimer’s Association are part of my chosen family,” said Matt. “I don’t say that lightly. I’ve made life-long and deeply cherished friends being a part of this organization. I feel more whole and complete because you all are a part of my life and we get to fight for something important together. I’m filled with joy, with hope, and with admiration. Not only is it an honor to advocate alongside you, it’s truly one of my favorite parts of my life."