From the Desk of George Vradenburg: Please Take Action

23 Monday Dec 2013

Posted by Ann Napoletan in Advocacy and Awareness, Research, USAgainstAlzheimer's, Washington

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

Friends –

We’ve finally got a budget deal – now what will Congress do with it?

The next three weeks are crucial in determining how much to invest in stopping Alzheimer’s.

Urge your members of Congress to increase funding for Alzheimer’s research now.

I was proud to participate at last week’s G8 Dementia Summit in London where world leaders recognized the leadership of the United States by endorsing our goal of preventing and treating Alzheimer’s by 2025. This landmark action marks a historic step forward in the global fight against Alzheimer’s.

And Wednesday, Congress took what could be the first step in freeing up additional funding for Alzheimer’s research by passing the first budget in years. Your advocacy helped make this happen!

But will Congress use the increased flexibility in this budget deal to allocate the funding needed to reach the goal of stopping Alzheimer’s by 2025?

The next three weeks will be crucial in determining funding levels for Alzheimer’s research in Fiscal Year 2014.

Please urge your members of Congress to support a significant increase in funding for Alzheimer’s research as they begin to flesh out the details of the new budget agreement.

Although the bi-partisan budget deal that Congress passed this week partially addresses the deep budget cuts – known as “sequestration” – that went into effect earlier this year, it does not yet determine the level of funding for NIH and for Alzheimer’s. The current level of Alzheimer’s research funding is only about one-quarter of the amount leading Alzheimer’s scientists have deemed as the minimum necessary to achieve the goal of ending Alzheimer’s by 2025.

Last week, at the landmark G8 Dementia Summit¹, member nations recognized the leadership of the United States by committing to identify an effective therapy for dementia by 2025 and to significantly increase the amount of funding for dementia research to reach that goal. This action underscores how the U.S. is seen as leading the global movement to stop Alzheimer’s disease, just as we played a similar role in global efforts to prevent and treat HIV/AIDS a decade ago.

Now Congress must respond to the call of the G8 and provide adequate funding for Alzheimer’s research so this country can continue to demonstrate its leadership in the global fight to stop Alzheimer’s by 2025.

Ask your members of Congress to urge the Appropriations Committee to include an $80 million increase in Alzheimer’s research, as well as an additional $20 million to support Alzheimer’s patient and caregiver programs in the spending package they’re creating right now.

Thanks to all your efforts in fighting the sequester and to the successful G8 Dementia Summit last week, momentum is building – now it’s up to us to turn that momentum into real-world action.

Your members of Congress need to hear from you today to ensure that ending Alzheimer’s is a top priority. Please send your message now.

To stop Alzheimer’s, we have to be brave and demand action – and insist that our leaders share our courage. Only when we join together as an engaged and enraged community will we stop this disease.

Sincerely,

George Vradenburg
Chairman and Co-Founder
USAgainstAlzheimer’s

More Invaluable Holiday Tips

20 Friday Dec 2013

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Expectations, Helpful Resources, Holidays, Support system, Tips, USAgainstAlzheimer's

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alzheimers, caregiving, christmas with alzheimers, dementia, holidays with alzheimers

tree If dementia has touched your life, you know how difficult the holidays can be. Expectations followed by disappointment and traditions slowly fading; a once joyous season often turns into what is perhaps the most stressful times of the year.

Earlier in December, I had the pleasure of being a guest on the USAgainstAlzheimer’s Activist Network call, and our very timely topic was – you guessed it – coping with the holidays. Trish Vradenburg, our co-founder, has compiled many of the tips from that call into a great piece for the Huffington Post.

Take a few minutes to read Making the Holidays Bright When Alzheimer’s Is in the Picture, and if you have a chance, listen to the recorded call. You’ll hear Susy Favaro, LCSW, from the Banner Alzheimer’s Institute, Virginia Biggar, Director of the USA2 Activist Network, and myself talking with both caregivers and several individuals who live with the disease every day. The callers who participated had many insightful comments and suggestions that could significantly improve this and future holidays for you and your family.

Do you have a holiday story or tip to share? If so, please leave a comment. By sharing our experiences, we have the potential to help each other immensely!

Happy Holidays!
Ann

Alzheimer’s Prevention Registry: Who, What, When, & How?

23 Saturday Nov 2013

Posted by Ann Napoletan in Advocacy and Awareness, Facts & Figures, Helpful Resources, Prevention, Research

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alzheimers, Alzheimers advocacy, alzheimers prevention initiative, alzheimers prevention registry, alzheimers research, banner alzheimers institute, dementia

I recently had the pleasure of participating in a webinar presented by the Banner Alzheimer’s Institute (BAI) in Phoenix. The hour left me feeling energized and more hopeful than ever that we can beat this disease. Without question, there are some great things happening in the world of research, but we have to help.

What Is the Alzheimer’s Prevention Initiative?

BAI is a non-profit organization dedicated to groundbreaking research, and the Alzheimer’s Prevention Initiative is one of their most crucial projects.

Jessica Langbaum, Ph.D., Principal Scientist and Associate Director of the Initiative, is passionate about this endeavor, and for good reason. Almost two years ago, she lost her grandfather – formerly a successful engineer – to Alzheimer’s, and she’s committed to doing whatever she can to save other families from similar heartbreak.

The most essential component of the Initiative is the Alzheimer’s Prevention Registry, which was created to connect like-minded individuals interested in stopping this horrible disease in its tracks.

Members are kept apprised of the very latest news and information in the world of dementia research, but that’s just part of the mission. The Registry also seeks to create an unprecedented pool of potential study participants for prevention research.

How Does It Work?

It’s important to note that joining the Alzheimer’s Prevention Registry does not obligate you to participate in research. What it does do is arm you with the knowledge you need to be a more effective advocate, while providing information on the latest study opportunities in your own community. From there, the decision is entirely your own.

As you might expect, a common question is, “What might a typical study look like?”

Prevention studies take various forms. Participating can be as quick and easy as completing an online survey in the comfort of your living room or visiting a nearby research center once or twice.

Of course there are also larger randomized clinical trials. In these longer-term studies, participants are assigned to either an experimental group or a control group and are observed over time. Some of these projects involve investigational drugs while others focus on things like healthy lifestyle choices.

Why Does It Matter?

Over 5.2 million Americans are currently affected by Alzheimer’s or related dementias – a number that’s expected to triple by 2050. The economic impact is staggering. Consider this. The disease costs our country $203 billion annually and that will grow to $1.2 trillion by 2050 unless we find a way to slow or stop the progression.

If we stay on the current trajectory, by 2050, every Medicare and Medicaid dollar could be spent on dementia with nothing left over.

The Alzheimer’s Prevention Registry has set an ambitious goal of enrolling 250,000 healthy members, 100,000 of those by the end of 2013. Individuals age 18 and over of all races and ethnicities are welcome, whether or not they have a family history.

How Can I Get Involved?

According to Dr. Langbaum, as many as 85% of drug trials face delays because they are unable to attract or retain a sufficient number of participants. Quite simply, too few people are volunteering due to fear, concerns about time commitment, or just because they aren’t sure where to start.

The fact is, most Alzheimer’s studies never get off the ground because they fail to meet recruitment goals. The good news is we can all be a part of the solution by joining the Alzheimer’s Prevention Registry today, and asking our friends to do the same!

Remember, becoming a member opens the door to opportunities, but in no way obligates you to take part in any research.

Every person who joins the Registry brings us one step closer to that breakthrough discovery! Visit the website to sign up today!

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The Banner Alzheimer’s Institute is a non-profit organization; however, I was compensated for this post. I’ve been a member of the Registry since May 2013.