Tag advocacy

Coming soon: Alzheimer’s listening session in San Francisco 8/10

0 comments By Bill, chapter CEO Tagged with , , , , , , , , , , July 6th, 2011 @ 9:11 am

You may have noticed the recent news about a new therapy for advanced melanoma. Good news. Listening to an interview with one of the scientists involved, he commented, “this is the payoff of decades of Federal investment in cancer research.” Indeed.

He made the case we make. The investment in cancer, heart disease and HIV/AIDS has been, and continues to be, a good one, making real differences in real people’s lives and bending the curve of cancer deaths downwards. We look now for a similar investment in Alzheimer’s disease before the Baby Boom generation is doomed to a huge wave of Alzheimer’s disease. Continue reading “Coming soon: Alzheimer’s listening session in San Francisco 8/10” »

Gov Brown Signs CA Budget – What does this mean for Alzheimer’s services?

5 comments By Sherrie, advocacy volunteer Tagged with , , , , , , , July 1st, 2011 @ 11:21 am

Have you noticed that so many times during the day, something makes you think of Alzheimer’s?  It happens to me, too, and three occasions immediately come to mind.

Driving a few days ago and listening to the radio, NPR alerted me to a story I wanted to hear.  With only a few minutes to my destination, I hurried home, raced up the stairs and tuned in before even saying hello to everyone.  My house was a madhouse so I couldn’t focus as intently as I wanted, but the story was about innovative research on families in Colombia beset with early onset Alzheimer’s.  This research is risky as the subjects will be completely healthy individuals, rather than those already with dementia symptoms, and at least one of the studies has been done only on animals.  Potential human side effects are unknown and it can be a frightening situation.  Yet, you know as well as I do that desperate families often have the courage to try anything.  We thank them for saying “Yes, I want to participate.”  This same story was highlighted in a series by the New York Times a year ago; it’s taken all this time to obtain the necessary research funding and sign up participants.  We’ll definitely keep an eye on this exciting study. Continue reading “Gov Brown Signs CA Budget – What does this mean for Alzheimer’s services?” »

News of memory implants reminds us: we can all contribute to the CA state plan’s awareness goals

0 comments By Sherrie, advocacy volunteer Tagged with , , , , , , , June 21st, 2011 @ 10:12 am

Screaming headlines greeted me when I returned from an Alzheimer’s meeting in San Diego on Friday night – “Memory Implant Gives Rats Sharper Recollection.” Well, not really a headline, and not screaming either, but rather an interesting article about the design of a brain implant that restored lost memory function and strengthened recall of new information in rats.  Don’t get too excited; scientists are a long way from human testing. But this is another hopeful sign and another compelling reason why we can’t ignore any viable brain research. Continue reading “News of memory implants reminds us: we can all contribute to the CA state plan’s awareness goals” »

Unable to attend the Forum, but still inspired

0 comments By Sherrie, advocacy volunteer Tagged with , , , , , , , , , , May 23rd, 2011 @ 12:54 pm

Unable to attend this year’s Advocacy Forum in Washington, D.C., which just concluded, I got caught up on its “happenings” by reading some of the highlights.  Sure, I know missing the party is not quite the same as being there, especially when your friends keep telling you how great it was.  But honestly, knowing all 600 advocates were speaking for millions of others still leaves me with the same hope and inspiration I would always feel when shoulder to shoulder with everyone.  You know the feeling – these are people who have been where you are; your experiences are so similar that you can finish each other’s sentences.  We love them and we need more of them! Continue reading “Unable to attend the Forum, but still inspired” »

Notes from the Alzheimer’s Association Advocacy Forum: Day 2 & 3 Training and to the Hill

0 comments By Bill, chapter CEO Tagged with , , , , , , , , , , , May 17th, 2011 @ 11:15 am

Our advocates study up on the HOPE and Breakthrough Acts

Following yesterday’s inspiring opening comments by former House Speaker Newt Gingrich, my fellow advocates and I were in store for an intense day of learning, training and sharing.

We first heard from members of the Obama administration, who assured us that Alzheimer’s is a national priority. Several more members of the current administration stayed to hear from more than 50 of our advocates who spoke up about their concerns regarding the nation’s struggle with Alzheimer’s. Their very personal stories reflected this country’s deficits in the areas of long term care insurance, Medicare reimbursement, social security eligibility, health care professional training, awareness and more.

Continue reading “Notes from the Alzheimer’s Association Advocacy Forum: Day 2 & 3 Training and to the Hill” »

Notes from the Alzheimer’s Association Advocacy Forum: Day 2, Newt Gingrich

0 comments By Bill, chapter CEO Tagged with , , , , , , , , May 16th, 2011 @ 12:06 pm

Newt Gingrich speaks at the Forum this morning

Good morning from day two of the Alzheimer’s Association Advocacy Forum. In this morning’s general session, we heard from former Speaker of the House Newt Gingrich. Newt co-chaired the Alzheimer’s Study Group with Senator Bob Kerry. The commission was responsible for making recommendations on how the country should move forward regarding Alzheimer’s – ideas that we are putting into motion today such as NAPA, the Breakthrough Act and the HOPE Act. He made a strong case for greater investment in Alzheimer’s research and care on the Federal level, reminding us of the enormous scale of the disease in terms of the human and financial costs. “Between now and 2050 Alzheimer’s will cost $20 trillion; in context Alzheimer’s will cost 1.5 times the current national debt. This one condition will cost the U.S. 50 percent more than the entire debt in the U.S.”  Continue reading “Notes from the Alzheimer’s Association Advocacy Forum: Day 2, Newt Gingrich” »

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