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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: NAPA

Advocacy

22 Saturday Dec 2012

Posted by Ann Napoletan in Caregivers, Events, Facts & Figures, Helpful Resources, NAPA, Research, Washington

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actionalz-logo2Having been through this experience, and now having lost my mom, I feel more compelled than ever to advocate, ADVOCATE, A-D-V-O-C-A-T-E!! Those of us who have suffered the wrath of Alzheimer’s or related dementias owe it to those who come after us to do what we can to advance the Alzheimer’s agenda in this country.

The Ohio Council of the Alzheimer’s Association is made up of the seven Association Chapters in the State of Ohio and exists to advance Alzheimer’s initiatives at the state and federal levels. The Council’s web page is a great source of information regarding upcoming events as well as a list of state and federal public policy priorities.

Are you educated on our government’s plans and priorities concerning Alzheimer’s and related dementia? There’s a lot going on, and our support is needed!

  • The (Ohio) Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (H.B. 27), passed December 20, 2012. This bill will simplify and standardize the process of obtaining guardianship across state lines, which is critical for families who are in crisis but do not have advanced directives in place.
  • (Ohio) Alzheimer’s Respite Programs and Services (Budget Line Item 490-414) provide funding for respite care, which can be a true lifesaver for full time caregivers.
  • The National Alzheimer’s Plan, unanimously signed into law in January, 2011, aims to enhance quality of care, expand support services for those suffering from the disease and their families, increase awareness, improve analytics, and most importantly “prevent and effectively treat Alzheimer’s disease by 2025.” This is an ambitious agenda, but one that we must push forward.
  • The Alzheimer’s Breakthrough Act (H.R. 1897), if passed, will make Alzheimer’s research a priority for the National Institutes of Health. Did you know that for every $28,000 the federal government spends on care for Alzheimer’s disease patients, it only spends $100 on Alzheimer’s disease research.

Consider this: If there were a treatment that would delay the onset of the disease by just five years, it would reduce government spending on Alzheimer’s care by nearly 50%. Without a viable treatment, over the next forty years the estimated cost for care in America is $20 trillion, including $15 trillion to Medicare and Medicaid. Sound like this needs to be a priority??

  • The HOPE for Alzheimer’s Act (S. 738/ H.R. 1386), if passed, will provide for early diagnosis and access to care planning services leading to better outcomes for individuals with Alzheimer’s disease and their caregivers.

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National Alzheimer’s Plan: A huge step in the right direction.

15 Tuesday May 2012

Posted by Ann Napoletan in NAPA, Research

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Today, the Obama Administration finalized the first ever national strategy on Alzheimer’s and associated dementias.  You can read more about the historic National Alzheimer’s Plan in this USA Today article –> Clock Ticking With New Plan to Fight Alzheimer’s.

What a massive step toward putting forth the resources necessary for major research projects and also to help families currently dealing with the disease – right here, right now.  The strategy puts a timeline around finding effective treatments and will shine a spotlight on our fight against Alzheimer’s like never before.

Thanks to research, great advances have been made in treating cancer, and perhaps we are nearing a day when the same will be true for this disease that robs so many people of their so-called golden years, and robs us of our parents, grandparents, spouses, and other family members and friends.

Initially, the plan calls for:

  • An $8 million study around an insulin nasal spray shown to be a potentially viable treatment for ALZ.
  • A $16 million contribution to an international study examining whether early treatment of amyloid (brain plaque) could head off the disease.
  • Government funded training for physicians and other medical professionals, focusing on effective ways to care for ALZ patients and their families.

In concert with National Alzheimer’s Plan, a new website has been established to provide “one-stop shopping” related to research, care, treatment, and community resources.  At first blush, this appears to be a fabulous tool for caregivers, so please share the URL with anyone who might need it.

Here’s to a light at the end of the tunnel…  It may still be a very dim light, but it’s a light nonetheless.  We’ll continue to keep the faith, spread the word, and watch things unfold over the next few years.

If you’d like to read the National Alzheimer’s Plan in its entirety, it can be found here.

Until next time… Carpe diem…

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The latest from our friends in Washington…

07 Tuesday Feb 2012

Posted by Ann Napoletan in NAPA, Petition, Research, Washington

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Exciting news from Washington!   The National Institutes of Health announced today that an additional $50 million is being earmarked for Alzheimer’s and dementia research.  This is part of the recently passed National Alzheimer’s Project Act, which calls for development of an effective treatment for the disease by 2025.

The thought of having viable treatments in place in as few as 13 years is mind boggling, and it truly offers hope to so many of us who are worried about what our own futures hold.

For more on today’s announcement, check out this article from CBS News.

If you’d like to do your part to let the President know that Alzheimer’s Disease can’t wait, click this link to sign the Petition For a Strong National Alzheimer’s Plan.

Until next time…Carpe diem…

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