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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: NAPA

Alzheimer’s: When Will the Government Put Their Money Where Their Mouth Is?

03 Tuesday Feb 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Face of Alzheimer's, Facts & Figures, Helpful Resources, Life After Caregiving, NAPA, Research, Ruminations, USAgainstAlzheimer's, Washington

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alzheimers, Alzheimers advocacy, alzheimers funding, alzheimers research, dementia

 


In recent days, staunch supporters including Senators Susan Collins (ME), Edward Markey (MA), Amy Klobuchar (MN), and Jerry Moran (KS) have encouraged President Obama to include an increase for Alzheimer’s research in his FY 2016 budget. After all, what’s a “plan” to end Alzheimer’s by 2025 without the funding necessary to do so?

And the Verdict is in

Disappointment ensued as the Obama Administration released the proposed budget yesterday, and Alzheimer’s was overlooked. In a press release, George Vradenburg, co-founder of USAgainstAlzheimer’s said, “If we as a nation do not make Alzheimer’s research a top priority, we simply cannot meet our national goal of preventing and treating Alzheimer’s by 2025.”

What will it take to convince our government that unless we do something to stop it, Alzheimer’s will be the public health crisis of our lifetime? Perhaps the powers-that-be need to listen carefully to Michael Auslin’s story, or that of Karen Garner, whose husband was diagnosed before his 50th birthday. What about Rebecca Emily Darling, who was just 26-years-old when her mother was diagnosed?

Proof in the Numbers

  • Alzheimer’s is the only cause of death among the top 10 in America that cannot be prevented, cured, or even slowed. More than 500,000 people die annually from Alzheimer’s.
  • Deaths from Alzheimer’s increased 68 percent between 2000 and 2010, while deaths from other major diseases decreased.
  • More than 5 million Americans are living with some form of dementia. If we remain on the current trajectory, that number will rise to 16 million by 2050.
  • Every 67 seconds, someone in the U.S. develops Alzheimer’s. By 2050, it will be every 33 seconds.
  • In 2014, the direct costs to American society of caring for those with Alzheimer’s totaled over $200 billion, including $150 billion in costs to Medicare and Medicaid.
  • Unless something is done to stop it, Alzheimer’s will cost an estimated $1.2 trillion (in today’s dollars) in 2050. Costs to Medicare and Medicaid will increase nearly 500 percent.

For more information, check out the Alzheimer’s Association’s 2014 Facts and Figures report.

Take Action

Consider this: Alzheimer’s research spending currently stands at less than 1% of the cost of care.

Please write or call your Senate and Congressional representatives. Ask them to support the fight to #ENDALZ.

If not now, when?

It’s been said there are two kinds of people: those who have been personally touched by Alzheimer’s and those who will be.

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Allan Vann: 3 Steps to Fight Alzheimer’s

03 Friday Oct 2014

Posted by Ann Napoletan in Advocacy and Awareness, Facts & Figures, Inspiration, NAPA, USAgainstAlzheimer's

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#endalz, Alzheimers advocacy, alzheimers awareness, dementia awareness, ending Alzheimers, NAPA

AllanThis morning, I came across one of the best articles I’ve seen in awhile. I was literally cheering on the inside as I hung on each word! In this piece, caregiver, blogger, and advocate Allan Vann adapted remarks recently made at a hearing sponsored by Congressman Steve Israel, D-NY (see below for more information).

You can find the article, 3 Steps to Fight Alzheimer’s, here. Please read and share widely. Let’s shout from the rooftop about what is needed to end Alzheimer’s!

For more from Allan, check out his blog at: http://www.allansvann.blogspot.com

 


The source of the following was: http://www.allansvann.blogspot.com/2014/10/3-steps-to-fight-alzheimers.html

The Alzheimer’s Solutions Summit, an intergovernmental hearing, was held on July 1, 2014 at the Long Island Alzheimer’s Foundation.  The hearing was initiated and chaired by Congressman Steve Israel (D-NY), co-hosted with State Senator Jack Martins (R-NY) and Assemblyman Charles Lavine (D-NY).  I was invited by Congressman Israel to testify as part of a caregiver panel.  In my allotted 5 minutes I discussed three major issues from my caregiver’s perspective.  Following that hearing, I submitted my remarks for consideration as a blog posting on the website of USAgainstAlzheimer’s, a 501(c)(4) organization engaging in public advocacy, federal relations, grassroots activity, and voter education.   -Allan Vann

 

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State of the Union Address Shines the National Spotlight on ALZ

14 Thursday Feb 2013

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, NAPA, Research, Washington

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It pleases me to no end to share this communication released by the Alzheimer’s Association today. This is exactly the kind of exposure we need to drive home the importance of the war we are waging on this disease. Thank you, President Obama, for shining the spotlight on this impending national crisis.

—–

From Alzheimer’s Association President & CEO, Harry Johns
February 13, 2013

Last night, President Barack Obama mentioned Alzheimer’s in his State of the Union Address, the first time that’s happened in thirteen years.   He said:

Today, our scientists are mapping the human brain to unlock the answers to Alzheimer’s; developing drugs to regenerate damaged organs; devising new material to make batteries ten times more powerful.  Now is not the time to cut these job-creating investments in science and innovation.  Now is the time to reach a level of research and development not seen since the height of the Space Race.

The Alzheimer’s Association applauds the President for underscoring the importance of funding for medical research, and specifically research to end the Alzheimer’s epidemic. We must provide Alzheimer’s scientists with the resources they require in time for the huge generation of Baby Boomers who will as much as triple the ranks of the more than five million Americans who have Alzheimer’s today.  We must change the trajectory of Alzheimer’s if we are to address one of the most significant underlying cost drivers of Medicare and Medicaid.

Just as with the National Alzheimer’s Plan and the previous financial commitments from the Obama administration, the President’s statement about the importance of Alzheimer’s research in his State of the Union Address is based on recognition of the human and financial impact of Alzheimer’s.  It is another important step on this continuing journey which our Association has so much responsibility to lead.  It indicates the impact of our public work and our work behind the scenes.   It is also a clear signal that your work and the work of our more than 500,000 nationwide advocates to make Alzheimer’s a national priority is making a difference.

Just three weeks ago, the Alzheimer’s Advisory Council, on which I have the honor to serve, unanimously endorsed recommendations to Health and Human Services Secretary Kathleen Sebelius, as well as to Congress, to update the National Alzheimer’s Plan.  These recommendations include benchmarks to achieve the Plan’s goal of preventing and effectively treating this deadly disease by 2025. In keeping with the President’s remarks last night, we call on the President and Congress to take action in the coming days to fully support the critical first steps in implementing this plan – a plan that is a result of bipartisan cooperation by Congress, swift and effective implementation by the Administration, and the input of many Americans with Alzheimer’s, their caregivers and other advocates from across the country.

We must ensure that the National Alzheimer’s Plan is fully funded.  We must continue to raise concern about the disease to be commensurate with its impact and to raise awareness of our Association. We must expand the reach of programs so that all who face this disease know that they don’t have to face it alone. And we must ensure that promising research is supported, shared and optimized in our fight with the devastating, debilitating killer that is Alzheimer’s.

I look forward to our next steps together and to our ultimate success at achieving our mission.  Thank you for everything you do to make such advances possible.

Harry Johns
Alzheimer’s Association President & CEO

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The Long and Winding Road

Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

Marilyn, BA (before Alzheimer's)

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