From April 7 to April 9, 2024 advocates from across the country joined together to advocate for 2024 federal policy priorities in D.C.
Among them were Theda Heiserman, an advocate from the Central and North Florida chapter; Daniel Marzoa, an advocate from the Southeast Florida chapter; and Andrea LoPiccolo, an advocate from the Florida Gulf Coast chapter.
Heiserman felt inspired to advocate because she believes in the power of community and collective action when it comes to making a difference.
“Witnessing the impact of these conditions on individuals and families first-hand has only strengthened my resolve to contribute to positive change through advocacy efforts,” Heiserman said.
LoPiccolo (featured in front of the U.S. Capitol in the photo on the left) also expressed her desire to make an impact.
“I was inspired to advocate at the AIM Advocacy Forum this year because, having participated at the state level, I realized that my voice makes a difference and I can make a valuable contribution in the fight to end Alzheimer’s,” LoPiccolo said.
Marzoa felt inspired by his urgent need to do more for Alzheimer’s.
“My 94-year-old grandmother has Alzheimer’s, and as her condition has deteriorated over the past years, I’ve felt profoundly helpless,” Marzoa said. “She raised me and shaped me into the man I am today, and her love has inspired me to honor her and all those affected by this disease. Our memories are invaluable, and I am committed to ensuring that we preserve them, not only for myself but for generations to come.”
Renewing the National Plan to Address Alzheimer’s Disease
One of the legislative priorities this year is the National Alzheimer’s Project Act Reauthorization Act (NAPA Act). This bill emphasizes the importance of healthy aging and risk reduction for Alzheimer’s disease to reflect the new sixth goal for the National Plan. The bill will help to address health disparities among underrepresented populations.
“The NAPA Reauthorization Act holds a special place in my heart as it extends the National Alzheimer’s Project Act, a lifeline for my grandmother battling Alzheimer’s,” Marzoa said (pictured on the right with advocate Amanda Walker). “This bipartisan bill resonates deeply with me, symbolizing hope and progress for those affected by this cruel disease. It serves as a guiding light on our path, offering ongoing support, compassion, and research to uplift not only my grandmother but also all families affected by Alzheimer’s.”
Improving Diagnosis and Detection
A timely diagnosis can lead to more treatment options and better health outcomes, but it requires properly trained health professionals. According to the Alzheimer’s Association, 85% of Alzheimer’s diagnoses are initially made by primary care providers (PCPs), but 40% of PCPs say they are never or only sometimes comfortable making a diagnosis.
The Accelerating Access to Dementia & Alzheimer’s Provider Training (AADAPT Act) will provide funding to address specific knowledge gaps and workforce capacity issues regarding Alzheimer’s and dementia that PCPs are facing. This important legislation will help empower PCPs to better diagnose Alzheimer’s and provide high-quality, person-centered care.
“The AADAPT Act holds significant importance as it provides essential tools and resources to primary care physicians, particularly in rural and medically underserved areas,” Heiserman said. “By championing the AADAPT Act, we can improve early detection, diagnosis, and access to quality care for individuals affected by Alzheimer’s disease and other forms of dementia.”
Strengthening the Dementia Public Health Infrastructure
Nearly 7 million seniors are currently living with Alzheimer’s in the U.S. The total cost of their care is projected to total $360 billion this year, making it one of the most expensive diseases in the country. The Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act Reauthorization Act of 2024 (S.3775 H.R.7218), another important legislative priority for AIM advocates, would authorize $33 million in annual funding through the Centers for Disease Control and Prevention (CDC).
“The legislative priority that I feel most passionate about is the BOLD Reauthorization Act, which will renew and strengthen Alzheimer’s public health efforts including early detection and diagnosis, which will reduce the risk of Alzheimer’s and support the needs of caregivers,” LoPiccolo shared.
Advocates Make An Impact
Volunteering with the Association both locally and in Washington D.C. has an impact on Alzheimer’s care, support and research.
“My favorite part of the experience was connecting with my grandmother via FaceTime right outside the Capitol building in D.C.,” Marzoa said. “It was truly special. Despite her not understanding my mission in our nation’s capital, the moment was filled with so much meaning and it was so incredibly emotional. My dedication to Alzheimer’s is a tribute to her and all those touched by this challenging disease.”
Heiserman, LoPiccolo and Marzoa encourage those thinking about advocating to make the leap.
“Together, through advocacy and collective action, we can work towards a future where these diseases no longer pose such a heavy burden on individuals, their families, our communities, and our nation,” Heiserman said. “The possibility of finding a cure is closer than it has ever been!”
“… I would encourage caregivers to join the Alzheimer’s Association,” LoPiccolo said. “The Association and advocates make a difference, they provide information, resources and well needed support.”
“If you’re considering getting involved and advocating, my advice would be: don’t even think about it twice,” Marzoa said. “Being a caregiver can sometimes be lonely and stressful, but getting involved and advocating connects you with those who understand. There’s power in sharing experiences without even needing to speak – a camaraderie that’s incredibly potent.”
To learn more about volunteering, visit AlzImpact.org/Volunteer or attend a monthly volunteer opportunity webinar hosted by the Florida chapters of the Alzheimer’s Association.
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