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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: ALZ Assn – National

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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Great Strides in Research

28 Monday Jan 2013

Posted by Ann Napoletan in A Place for Mom, Advocacy and Awareness, ALZ Assn - National, ALZ Assn Central Ohio, Genetic Testing, Helpful Resources, Research, Washington

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While we would all love nothing more than for a cure to be found tomorrow, we should realize that ALZ research really has come a long way in recent years. An informative article from A Place For Mom discusses some of the newest techniques being used for early detection. From brain imaging and genetic markers to examining proteins in blood and cerebrospinal fluid, researchers are making progress every single day.

These advances underscore the importance of supporting organizations like the Alzheimer’s Association as they work to increase awareness and raise research dollars. Another critical part of the equation, of course, is reaching out to your legislators to stress the urgency of this issue.

Not sure who your Senate and House representatives are? Click a link to find your reps:  —>   U.S. Senate  or  U.S. House

And don’t forget to read the latest on ALZ detection: Early Detection Alzheimer’s Tests: What’s New?

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The Loss of an Alzheimer’s Champion

19 Saturday Jan 2013

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Celebrities, Inspiration

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Pauline Friedman Phillips, more commonly known as Abigail Van Buren – or Dear Abby – passed away on January 17. She was 94 years old and had suffered from Alzheimer’s for over 15 years.

I remember hearing a lot about Dear Abby, probably back in the 70’s, but never really paid much attention. As I’ve been reading about her the past couple of days, I’m finding she was actually quite an extraordinary woman. In 1956 at the age of 38, she approached the editor of the San Francisco Chronicle and informed him that the paper’s advice column was boring. She submitted samples of her work and was promptly hired to take over the column. In 1956, that was a pretty bold move for a female! Let’s face it, the 1950’s was the decade of June Cleaver, a far cry from the career women of this millennium (absolutely no offense to stay at home moms, but it was a different world sixty years ago!).

Not afraid of ruffling feathers, Mrs. Phillips was an early supporter of gay rights, and when asked her opinion on Viagra, she called it “wonderful.” While Dear Abby was once known for advising against divorce, she credited her readers with teaching her that under certain circumstances, it was the only healthy choice. Willingly admitting that she could be cocky, she also showed great compassion for her readers. Upon receiving letters from people that sounded suicidal, she would pick up the phone and call them, encouraging them to seek help.

I had no idea that she was also a very early advocate for Alzheimer’s disease, again showing her willingness to tackle tough topics. In 1980, she published a letter from a woman seeking advice after her husband had been diagnosed with ALZ. Abby assured the distraught woman that she wasn’t alone and told her about a newly formed organization called the Alzheimer’s Association. Within two weeks of that column’s publication, the Association was flooded with inquiries.

Over the years, Abby continued to help connect people with the ALZ resources they needed, so there was some irony in the fact that she herself began to show signs of the disease in the mid 1990’s. Lonnie Wollin, one of the founders of the Alzheimer’s Association calls her impact on ALZ advocacy “profound.” She credits Mrs. Phillips with boosting awareness and helping enable the Association obtain funds to support families, educate caregivers, and ultimately increase the country’s research budget from $2 million in 1980 to over $450 million today.

So from all of us who have personal experience with this unrelenting disease, and for all whose life will be touched by it in the future: Thank you, Dear Abby. May you rest in peace. ♥

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Marilyn, BA (before Alzheimer's)

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