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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: Alzheimers advocacy

A Story for Valentine’s Day & Beyond

13 Saturday Feb 2016

Posted by Ann Napoletan in Advocacy and Awareness, Blogging, Books, Caregivers, Celebrities, Face of Alzheimer's, Helpful Resources, Inspiration, Tips, USAgainstAlzheimer's

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alzheimer's books, alzheimers, Alzheimers advocacy, alzheimers caregiving, b smith, barbara smith, before i forget, dan gasby

coverLast fall, I had the pleasure of attending a WomenAgainstAlzheimer’s dinner where Barbara (B.) Smith and husband, Dan Gasby, were honored for their Alzheimer’s advocacy work. You may know B. as a chef, restaurateur, entrepreneur, author, lifestyle expert, television host, magazine publisher, or supermodel – this lady has quite a resume!

What you may not know is that Barbara was diagnosed with younger onset Alzheimer’s in 2013 when she was just 64 years of age.

Today, Dan and B. work tirelessly to bring attention to the impending social crisis that is Alzheimer’s disease. They’ve recently written a book entitled, Before I Forget: Love, Hope, Help & Acceptance in Our Fight Against Alzheimer’s, chronicling their story, and whether you have been touched by Alzheimer’s (yet) or not, I suggest you pick up a copy and read it.

Dan writes with a courage and forthrightness that we don’t always see. He shares the good, the bad, and the ugly, in an enlightening and even validating style for those of us who have been through the journey. As I read each page, I found myself nodding, “YES, I’ve felt that way” or “Oh, I remember when that happened to us.”

Throughout the book, Dan shares practical tips based on his own experience. He discusses how this journey has affected the couple’s marriage and some of the things he has found help him cope on a daily basis. Before I Forget is a book about Alzheimer’s, but make no mistake – first and foremost, it’s a love story.

In a recent Alzheimer’s Talks call, Dan encouraged listeners to “do one thing” to move us forward in this fight. Read more about that call in my recap of a very compelling, thought-provoking hour with Dan. You can find it by visiting my friends at UsAgainstAlzheimer’s. Thank you to Trish Vradenburg and Virginia Biggar for allowing me to share my thoughts in A Love Story: B. Smith & Dan Gasby.

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$350 Million Closer to 2025

26 Saturday Dec 2015

Posted by Ann Napoletan in Advocacy and Awareness, Helpful Resources, Research, Washington

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

si-budget

Photo Credit: Andrew Magill / Flickr

As you may have heard, a massive spending bill was passed by Congress and signed into law by President Obama last week. The bill includes a $350 million increase for Alzheimer’s research and an additional $85 million for the BRAIN Initiative.

We know we have a long way to go if we’re to meet one of NAPA’s fundamental goals: Prevent and effectively treating Alzheimer’s Disease by 2025. We’ll need to see more increases – for FY ’17 and beyond – but this is a big step in the right direction!

NIH director Francis Collins called the funding bill “the most encouraging budget outcome in 12 years,” adding that the increase “comes at just the right time to take advantage of remarkable opportunities to improve human health, powered by dramatic advances in scientific knowledge and technological innovation.” 
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Alzheimer’s Hope & Merry Christmas!

24 Thursday Dec 2015

Posted by Ann Napoletan in Advocacy and Awareness, Early Onset, Inspiration, Washington

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2016 election, Alzheimers advocacy, alzheimers awareness, alzheimers funding, alzheimers research, dementia

We-Can-Do-It-Rosie-The-Riveter-PosterAs many of you know, last week, Congress passed the omnibus bill which included $350 million in additional funding for Alzheimer’s. This brings our funding to just below $900 million – which, while still woefully under what is spent on the other major diseases – is a vast improvement.

Hillary Clinton has now made Alzheimer’s a campaign issue and is the only candidate who has a solid plan for addressing this disease that WILL bankrupt Medicare and Medicaid if we sit back and do nothing (or don’t move quickly enough).

I just got some news about an upcoming town hall the Clinton campaign is holding next week in Portsmouth, NH, and it sounds like Alzheimer’s will also be spotlighted there. Portsmouth has a population of 21,000 and there are between 15 and 20 Younger Onset caregiver spouses in their local support group. That’s a massive number for such a small community – and those are only YOUNGER onset – age 65 and younger.

I was in the car today thinking about all of this, and it gave me chills. Back in 2004, when we realized Mom’s “symptoms” were more than normal aging, you barely heard the “A” word uttered. In 2015, it’s a Presidential campaign issue. Our voices ARE being heard. If you’re an advocate – keep doing what you’re doing. We’re chipping away at this, and brilliant researchers like Rudy Tanzi (named as one of Time Magazine’s 100 Most Influential People in 2015) and Reisa Sperling are so ready to find the answers we’ve been looking for for such a long time!

Last but not least, thank you for reading The Long and Winding Road. I am truly grateful for each and every visitor to this site and I would like to wish you and yours a very Merry Christmas. I’ll leave you with what was always my mom’s favorite Christmas song…

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The Long and Winding Road

Marilyn, BA (before Alzheimer's)

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