From left, Thad Nowak, Benji Nowak, Tim Nowak, Connie Nowak, Mark Shirey, Carol Shirey. “Impressive, positive energy at the walk. The Polish Power Walkers team had a great time.”
The 829 registered participants from 156 teams in Sunday's Walk to End Alzheimer's Northern Virginia, held at Reston Town Center, understood that each dollar they raised and each step they took that day would support the Alzheimer's Association's fight to #ENDALZ. More than likely, they were aware that the FDA-approved pharmaceutical treatments, such as aducanumab and lecanemab in 2021, could play a role in slowing down the cognitive decline of Alzheimer’s. Still, the pharmaceuticals are not cures for Alzheimer’s, that results in loss of brain cells and function.
Alzheimer’s disease is the sixth leading cause of death in the United States, according to the CDC. Alzheimer’s disease is eventually fatal. There is no cure. According to the Alzheimer's Association, Stages of Alzheimer's, the average life expectancy for someone living with Alzheimer’s disease is four to eight years after diagnosis. However, some people may live for as long as 20 years or more.
Some participants, like Susan Coyle, Kate Coyle and Lynn Anderson of Great Falls, said it was “fantastic to be at Walk for Alz supporting the cause.” They carried purple Promise Flowers, which are for those individuals who have lost someone to the disease. Susan Coyle said her husband died of the disease in 2021. ”He had it for three to four years,” she said.
Standing at the microphone under the Reston Town Center's open-air pavilion, speaker Congressman Gerry Connolly told how Alzheimer’s disease is a leading cause of death in the United States. Facing him, walk participants created a meadow of 800 plus raised Promise Garden flowers, everyone crammed in tight under the pavilion and spilling over onto the sidewalks and streets. Each participant was given a Promise Garden flower in the color that best represented their diverse connection to the disease. A blue flower represents someone living with Alzheimer's or another dementia.
According to Connolly, over 6 million Americans now live with Alzheimer's, and 1 in 9 people aged 65 and older has Alzheimer's disease. Because baby boomers live longer, the Alzheimer's Association estimates that number will triple by 2050.
In the crowd stood Thad Nowak and Connie Shirey, members of the Polish Power Walkers team, both holding blue flowers.
Connolly said it was critical to provide the necessary resources to help tackle the demands of Alzheimer’s disease and the disease itself. Connolly said that his grandmother received a diagnosis of Alzheimer's and watching her fade away before his eyes was one of the most difficult things he had to deal with growing up. Connolly explained that he couldn't fully comprehend the toll it was taking at the time, not only on her but also on his family.
Thad Nowak and Connie Shirey did not stand alone holding their blue flowers. Gathered close to them, Benji Nowak, Tim Nowak, Connie Nowak, and Mark Shirey held yellow Promise Flowers, representing walkers currently caring for or supporting someone with Alzheimer’s disease or dementia.
According to Connelly, this year alone, the cost estimate for providing care to individuals with Alzheimer’s and dementia was over $345 billion, and by 2050, these costs could rise to nearly $1 trillion. Connolly said for Fiscal Year 2025, he requested increases of $318 million for Alzheimer's research at the National Institutes of Health and significant investments in the BOLD Infrastructure for Alzheimer’s Act, which bolsters the public health infrastructure for Alzheimer’s and dementia.
Connolly said he has tried to do all he could during his time in public service to ensure that every family going through this struggle has better access to care, support, and more treatment options. Connolly supported the S.134 - Alzheimer's Accountability and Investment Act to ensure a strategy for all medical research dollars going into the search for Alzheimer’s treatments and cures. This bill passed in the Senate on July 30, 2024, and goes to the House next for consideration.
Connolly backed the H.R. 7688- Accelerating Access to Dementia and Alzheimer's Provider Training Act (AADAPT Act), which would bolster training on dementia and treatment to primary care providers to better detect, diagnosis and treat Alzheimer's and other forms of dementia and deliver high-quality, person-centered care in community-based settings. The bill is in committee. Connolly is a cosponsor of the S.626 - Comprehensive Care for Alzheimer’s Act. It aims to improve care coordination for Alzheimer's patients, their doctors, and caregivers.
Pharmaceutical progress against Alzheimer’s disease grows. Cindy Schelhorn, senior director of communications and marketing for the Alzheimer's Association National Capital Area Chapter, said that FDA-approved Alzheimer's medications fall into two categories: drugs that temporarily ease some symptoms and drugs that change disease progression in people living with the disease. Lecanemab and donanemab, specifically, aim to decelerate the progression of Alzheimer's disease. Shelhorn explained, “This is why early detection and diagnosis of Alzheimer's is more important than ever.
According to a 2023 news release by Eisai, the manufacturers of LEQEMBI™( lecanemab), the company announced that they set the U.S. launch price of the drug at $26,500 per year. “Eisai continues to pursue a less frequent maintenance dosing regimen for LEQEMBI, such as monthly instead of current biweekly regimen, upon significant amyloid beta clearance to prevent re-accumulation of amyloid beta biomarkers while maintaining clinical efficacy,” states the 2023 news release.
On July 2, 2024, the U.S. Food and Drug Administration granted full clinical approval to Eli Lilly to market donanemab, brand name Kisunla. Eli Lilly announced they set the drug's price at $32,000 a year. Unlike the other therapies in this class, the drug's testing aimed to stop the treatment once the plaques had cleared the brain. The treatment cost will vary depending on the patient and the length of treatment.
Shelhorn said the Alzheimer’s Association Center for Dementia Respite Innovation (CDRI) funds new respite care innovation projects nationwide. “Over the course of five years, the CDRI will award $20 million in competitive grants to local respite care providers to improve and increase the delivery of person-centered dementia care with a focus on innovation, collaboration, outcomes, accessibility, affordability, and sustainability. We do not have a Fairfax County recipient in 2024.”
There are two additional Promise Flowers. The orange one is for those who support the Alzheimer's Association's cause and vision of a world without Alzheimer's. The white one is reserved for the first person cured of Alzheimer's disease.