Maine residents and JAX researcher join Alzheimer’s advocates on Capitol Hill to promote disease awareness and research funding
By Drew Wyman
Advocates of the Alzheimer's Association, Maine Chapter, Thom and Jackie Frisk of Bangor; Mike Hartt and Mary Dysart Hartt of Hampden; John Pulver of Harrison; Deb Johnson of Waterford; Cathy Walters of Hollis Center; Jacquie Guerin of Sanford; and Josh Sawyer of Springvale are joining Gareth Howell, Ph.D. of The Jackson Laboratory and more than 1,000 fellow advocates from across the country on Capitol Hill to advance legislative policies that will improve the lives of over 5 million Americans living with Alzheimer’s. Today, there are more than 28,000 people in Maine living with Alzheimer’s and 69,000 Mainers providing unpaid care.
Convening June 17-19 in Washington, D.C. for the Alzheimer's Association AIM Advocacy Forum, the nation's premier Alzheimer's disease advocacy event, the Frisks will meet with members of the Maine delegation including Senator Susan Collins (R-ME) and Senator Angus S. King (I-ME).
The advocacy event will include testimony to the United States Senate Special Committee on Aging, where Howell will join Academy Award-Winning Actress Marcia Gay Harden; Lisa C. McGuire, Ph.D., of the Centers for Disease Control and Prevention, and others to address “Changing the Trajectory of Alzheimer’s: Reducing Risk, Detecting Early Symptoms, and Improving Data” on Tuesday, June 19 at 2:30 p.m. The testimony will be broadcast live and can also be viewed as an archive here.
"It is an honor to be asked to represent The Jackson Laboratory and the wider scientific community at the Senate Special Committee on Aging," said Howell. "I feel very optimistic about the promising Alzheimer's disease research happening at JAX and around the world. From the impact of diet and lifestyle to resiliency to more representative disease models, today's novel strategies and state-of-the-art approaches are bringing us closer than ever to finding tomorrow's cures."
Advocates will urge their members of Congress to pass two bipartisan bills that are critical to the fight against Alzheimer’s: The Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (S. 2076/H.R. 4256) and the Palliative Care and Hospice Education and Training Act (PCHETA) (S. 693/ H.R.R 1676).
“Alzheimer’s is the sixth leading cause of death in this country, it has no effective treatment or cure. My wife Jackie and I are visiting Washington DC to advocate for research money now to prevent it from bankrupting our healthcare system in the near future. It may be too late for Jackie, hopefully it will have some effective treatment for our children’s generation,” said Thom Frisk.
If passed, the BOLD Infrastructure for Alzheimer's Act would apply a public health approach to Alzheimer's disease by establishing a modern infrastructure for the prevention, treatment, and care of Alzheimer’s and other dementias. PCHETA, would ensure America has an adequate, well-trained palliative care and hospice workforce through worker training, education and awareness, and enhanced research.
Advocates will also urge their members of Congress to support a $425 million increase for research funding at the National Institutes of Health (NIH) on Alzheimer’s disease for fiscal year 2019—an increase that is necessary to address the mounting public health crisis and cost of Alzheimer’s, the most expensive disease in America.
Alzheimer’s is the only leading cause of death in America without a way to prevent, cure, or even slow its progression. Consequently, in 2018 alone, Alzheimer’s and other dementias are expected to cost the United States $277 billion, with $186 billion being borne by Medicare and Medicaid, meaning 1 in every 5 Medicare dollars will be spent on a person living with Alzheimer’s.
“Our advocates know first-hand that an early diagnosis offers many benefits, including access to more effective medical and lifestyle interventions and the ability to take an active role in planning with family members for the future,” said Adam Lacher, Director of Advocacy at the Alzheimer’s Association, Maine Chapter.
Together with these advocates from Maine and across the country, the Alzheimer’s Association is also commemorating the annual Alzheimer’s & Brain Awareness Month by highlighting resources that can help individuals in the wake of a diagnosis, including offering 10 Steps to Take Following an Alzheimer’s Diagnosis, as well as 10 Warning Signs to help people understand early symptoms of Alzheimer’s or behaviors that merit discussion.
To learn more about the Alzheimer’s Association AIM Advocacy Forum, please visit alz.org/forum.
To learn about Thom and Jackie Frisk’s story with younger-onset Alzheimer’s, visit www.jax.org.
About Alzheimer’s & Brain Awareness Month
June is Alzheimer’s & Brain Awareness Month, a time dedicated to increasing public awareness of Alzheimer’s disease, available resources and how you can get involved to support the cause. Visit alz.org to learn more about Alzheimer’s, its warning signs, the importance of early detection and diagnosis as well as information on care and support.
About the Alzheimer’s Association
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer's care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s ®. Visit alz.org or call 800.272.3900.
About The Jackson Laboratory
The Jackson Laboratory is an independent, nonprofit biomedical research institution based in Bar Harbor, Maine, with a National Cancer Institute-designated Cancer Center, a facility in Sacramento, Calif., and a genomic medicine institute in Farmington, Conn. It employs 2,100 staff, and its mission is to discover precise genomic solutions for disease and empower the global biomedical community in the shared quest to improve human health. For more information, please visit www.jax.org.