SALT LAKE CITY — Bill and Beverly Miller have long been outstanding local advocates for Alzheimer's disease and have pushed for more available resources and treatment options.
Now, they're taking their fight to Washington, D.C.
The Salt Lake couple are participating in the upcoming Alzheimer's Association Advocacy Forum later this month, where they will meet with members of Congress to encourage action on Alzheimer's disease.
Their efforts, coupled with many others, have led to progress on the mind-killing condition in Utah, helping to create a statewide plan that aims to increase awareness of the disease and help individuals and businesses deal with the changes within a person's brain that it can produce over time.
"We're just two out of millions of people in the United States affected by Alzheimer's disease," Bill Miller said. "This disease doesn't just affect the individual with the disease. Its ripple effects are felt throughout entire families and communities."
He said legislative action would help "make life a little easier for everyone in this situation."
Beverly Miller, 66, has experienced symptoms of cognitive decline in her day-to-day life for years. Many of her executive functions are now gone, which is very different for someone who used to run classrooms and offices with ease. Her husband, also once an academic man, has become her caregiver, constant companion and champion.
After dealing with the sadness of a diagnosis more than three years ago, the Millers decided to involve themselves in a variety of activities, including the local chapter of the Alzheimer's Association, where they made friends, received support and learned more about the disease that was slowly stealing Beverly's mind.
In Utah, more than 32,000 residents age 65 and older have Alzheimer's disease. Approximately 137,000 friends and family members help to manage the significant emotional, physical and financial challenges of caregiving for their loved ones dealing with the disease and other dementias, according to the local chapter.
While Utah has the fastest-growing Alzheimer's disease population, up to 16 million Americans are expected to be diagnosed with the progressive and fatal mental deterioration by 2050. The surge is expected to strain family financial situations, but also the entire health care system and state and federal budgets, specifically Medicare.
On Tuesday, President Barack Obama announced a new initiative to map the human brain, a plan modeled after the Human Genome Project, and one that is designed to encourage the development of new tools and technologies that aim to answer questions about Alzheimer's disease and other memory disorders.
It is the first of its kind to delve into the biomedical science of the brain and its function. Congress has set a national goal to stop Alzheimer's by 2025, but with it, advocates hope to help erase the social stigmas associated with brain diseases and also forge the way for more research that could target causes and treatments for dementia, which is often only considered to be age-related.
The president's 2013 budget proposal includes $80 million tagged for research and $20 million for awareness, education and outreach efforts, as well as caregiver support. Funding has yet to be approved by Congress.
Advocates like the Millers were critical to the May 2012 release of the first National Alzheimer's Plan, which paves the way for potential financial appropriations and other efforts that could help slow the scourge of Alzheimer's disease.
"We are going to Capitol Hill to tell Congress to fully fund the research, education, outreach, and support the activities and priorities included in the National Alzheimer's Plan," Bill Miller said. "We are facing a crisis that grows day by day, but Congress has yet to act decisively to overcome it. Now is the time."
The forum, in its 25th year, features various keynote speakers and breakout workshops dealing with topics of advocacy and education. It will be held April 22-24 in Washington, D.C., with congressional scheduled for April 24.
Interested Utah residents can also contact state representatives by phone, email or U.S. mail. Contact information can be found online at www.usa.gov.
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