The Face of Alzheimer’s: Michael Ellenbogen

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bookI recently read Michael Ellenbogen’s book From the Corner Office to Alzheimer’s and found this poignant account of living with the disease to be touching, heartbreaking, and eye-opening to say the least.

Ellenbogen, a former IT exec and self-proclaimed workaholic, was diagnosed with Early Onset AD in 2008. At that time, he was just 49-years-old and had noticed his earliest symptoms ten years earlier – before his 40th birthday. His forthright style helps us to understand what it’s like – from noticing the initial subtle changes, to trying to keep the wheels on the bus, so to speak, and live a “normal” life, to the search for a diagnosis, and beyond.

Yesterday, Ellenbogen wrote an enlightening post on katiecouric.com. When you have a few moments, pop over there and read My Name is Michael, and I Am Living with Alzheimer’s.

Stories like this not only serve to help crush the stereotype and stigma surrounding dementia, but they allow us – the family members, friends, and caregivers – to understand what it feels like to be that person.

In those early years with my mom, we didn’t know what was happening, and even once we did, we tended not to talk about it to avoid upsetting her. Maybe we thought if we buried our heads in the sand, it would go away. We spent years living in denial. I so wish we’d handled it differently.

Courageous people like Michael Ellenbogen who are willing to share their story are helping today’s families see that it’s okay to talk about it. In fact, it’s really only through talking that we have any chance of solving the problem…

Learn more about Michael by visiting The Michael Ellenbogen Movement on the web.

From the Desk of George Vradenburg: Please Take Action Now

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Dear Friends,

Elected officials in
Washington are playing
games with lifesaving
research.
Researchers say we can
end Alzheimer’s in the
next decade, but not
without an investment in
research.
Tell Congress that finding
a cure starts now – stop
the cuts to biomedical
research.

While Republicans and Democrats play partisan politics over Obamacare and a government shutdown, their antics are threatening the nation’s commitment to critical Alzheimer’s research. Alzheimer’s research is not just another line item in the budget – you and I both know that it’s the key to ending the years of pain and suffering that families face as they battle this disease.

Draconian budget cuts – known as “the sequester” – went into effect earlier this year and have cut funding for Alzheimer’s research and other programs. Right now, Congress is considering multiple bills to keep the government from shutting down while a longer-term spending bill is negotiated. Unless we put pressure on Congress to stop the sequester, deep cuts to Alzheimer’s research are likely to continue for years to come.

Join thousands of other supporters to speak out before Monday’s budget deadline. We can’t let these cuts become the new normal.

Tell Congress: Quit playing games with the well-being of our loved ones. Stop the sequester and invest in Alzheimer’s research.

A day doesn’t go by without more stories documenting the devastating effects of sequestration’s cuts:

  • The current NIH budget for Alzheimer’s research is down $20 million from the previous year.1 Alzheimer’s is already grossly underfunded, and this reduction wipes out previous modest gains.

  • Some researchers are being forced to take out personal loans to avoid having their labs shut down.2

  • Fewer physician scientists are being trained. One in ten slots were eliminated this past year.3

The story gets even worse: Republicans and Democrats agree that these cuts to research funding are a bad idea. They agree! But this bipartisan consensus is being drowned out by sequester politics.

That’s why it’s so important for constituents like you and me to contact our lawmakers. It’s easy for them to put Alzheimer’s on the back burner unless we mobilize and speak out.

Ask your members of Congress to work out a deal that protects critical research funding. Keep the pressure on right now – before the upcoming budget deadline.

Researchers say with adequate resources we can end Alzheimer’s in the coming decade. We can’t afford to wait. We can’t afford to let these cuts stand.

Thank you for being part of this movement.

Sincerely,

George Vradenburg
Chairman and Co-Founder
USAgainstAlzheimer’s

1. http://blogs.marketwatch.com/encore/2013/07/09/budgeting-for-the-alzheimers-fight/
2. http://fcnp.com/2013/08/21/congressman-morans-news-commentary-sequester-cuts-disrupting-nih-projects/
3. http://www.baltimoresun.com/news/opinion/oped/bs-ed-biomedical-research,0,6244826.story

More than 350 leading Alzheimer’s researchers agree that we can prevent and effectively treat Alzheimer’s by 2025 – and it could even be sooner if critical investments and reforms are made. We must SUBSTANTIALLY INCREASE funding for Alzheimer’s research in the next 5 years and we must DRAMATICALLY SHRINK the time it takes to get new, safe therapies to market.USAgainstAlzheimer’s is a community of enraged and engaged individuals who have been touched by Alzheimer’s disease and are committed to achieving the bold and attainable goal of ending Alzheimer’s.

Book Giveaway

Ann Napoletan's avatarThe Long and Winding Road...

And the winners are…….. Cyndy and Becky.  Congratulations!! Please send me an email and include your full name and mailing address.  anapoletan(at)gmail(dot)com

Max contacted me and generously donated a copy of the book (in addition to the book I had planned to give away), thus two winners were randomly chosen.

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Why_Did_Grandma_PutAs World Alzheimer’s Month draws to a close, I thought it would be fun to do a book giveaway.

Many of you know I’m a huge fan of 17-year-old Max Wallack, an incredibly gifted third year neuroscience major at Boston University. Max is a tireless advocate and researcher in the Molecular Psychiatry and Aging Laboratory at BU’s Alzheimer’s Disease Center and was recently published in the Journal of Alzheimer’s Disease.

Winner of too many awards and honors to list, he founded Puzzles to Remember at age  12. Together with the Springbok, Max created a unique line…

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