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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Washington

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

USAgainstAlzheimers

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

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Caregiving 101: Outstanding Online Resources

17 Sunday Nov 2013

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Caregivers, Helpful Resources, November-National ALZ Awareness Month, Research, Support system, Tips, USAgainstAlzheimer's, Washington

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alzheimers, alzheimers resources, caregiver resources, caregiving, dementia

nat fam caregivers monthNovember marks both National Alzheimer’s Awareness Month and National Family Caregivers’ Month, and what better time to highlight some helpful online resources.

When my mom developed Alzheimer’s, I knew nothing – or less than nothing if that’s possible! It was truly baptism by fire, and I wish I’d had access to the plethora of information out there today.

Even just connecting with others who were at various stages of the journey would have been a godsend. Ironically, it’s been since Mom’s passing that I’ve discovered a lot of these resources, which is why it’s important to me to let other caregivers know they’re available.

Alzheimer’s Association

alz-assn-symbolThe Alzheimer’s Association offers several excellent tools including:

  • The Alzheimer’s and Dementia Caregiver Center is a portal providing a window into a variety of tools and resources. There you’ll find help on behaviors, communication, legal and financial matters, and care options, as well as tips on driving and safety issues, activities for your loved one, and respite care.
  • Community Resource Finder will help you locate resources, services, and programs right in your own community. It’s as simple as entering your zip code and choosing from a list of over 20 categories including elder care attorneys, assisted living communities, area agencies on aging, home health care, and many more.
  • ALZConnected is a virtual community of caregivers. The site is divided into two sections; message boards let members connect with other Alzheimer’s families on topics such as caring for a spouse or partner, clinical trials, and early onset, among others. The solutions pages allow users to pose questions to the community, peruse existing questions and answers by topic, or respond to questions posted by other members.
  • Alzheimer’s Navigator guides you through the process of developing an action plan tailored to your own unique situation.
  • Virtual Library provides access to thousands of books, journals, and other media, available to borrow.

Facebook

fb-iconDid you know there are many Alzheimer’s and dementia virtual communities on Facebook? These groups provide a great way to connect with other caregivers who truly understand what you’re going through. In addition to camaraderie and support, they provide a jumping off point for finding tons of other resources. A few of my favorites FB communities include:

  • USAgainstAlzheimer’s Facebook Community
  • Dementia Aware
  • Memory People
  • Alzheimer’s Caregiving Knowledge Base
  • Forget Me Not
  • Early Onset Alzheimer’s Support Group

Other Awesome Resources

Bob DeMarco’s Alzheimer’s Reading Room is one of most well-received and heavily visited Alzheimer’s blogs on the web. Bob was his mother’s primary caregiver until her passing, so he brings tons of personal experience to his writing.

His site is also a great resource for the latest news and developments in the world of Alzheimer’s. The Alzheimer’s Reading Room is a wonderful source of practical advice for those dealing with Alzheimer’s, and I suspect that once you start reading, you won’t be able to stop.

I also recommend checking out Alzheimer’s Speaks founded by highly sought after dementia expert Lori La Bey whose mother has struggled with Alzheimer’s for more than 30 years. Frustration with lack of information and resources led Lori to develop the site as a way to help other caregivers.

Alzheimer’s Speaks is currently recognized as the number one online influencer for Alzheimer’s, and it offers an incredible wealth of information. On the site, you’ll find tools, resources, articles, and much more including links to the Dementia Chats webinar series and the extremely informative Alzheimer’s Speaks Radio.

Finally, IAM-Care is a new site billed as the first comprehensive caregiving platform for Alzheimer’s and dementia. It is currently in beta test but founders invite anyone interested to join, take a look around, and provide feedback.

At IAM-Care, the vision is to offer a platform that combines social networking with access to expert knowledge. Perhaps most importantly the site provides secure, personalized healthcare tools to help every caregiver keep vital information organized and at their fingertips.

Get Involved!

us-against-alzIf you’re looking for a way to take action and become an advocate, I suggest checking out USAgainstAlzheimer’s. Founded by George and Trish Vradenburg, this grassroots organization is serious about finding a cure by 2020. Take a look at part of their mission statement:

We are dedicated to mobilizing individuals to demand the urgency, passion and commitment needed by our political, business and civic leaders to achieve the goal of ending Alzheimer’s by 2020

USAgainstAlzheimer’s will provide you with the latest news from Washington as well as the tools you need to make your voice heard.

alz-prev-initAnother powerful way to make an impact is to join the Alzheimer’s Prevention Registry, an offshoot of the Banner Alzheimer’s Institute in Phoenix, Arizona. The registry provides an easy way to stay connected with Alzheimer’s prevention studies taking place in your own community.

The organization’s goal is to register 250,000 members by 2015, bringing together those who believe that the time to end Alzheimer’s is NOW. It only takes a few minutes to register; membership is free and does not obligate you to participate in any research.

Being part of the Prevention Registry will give you access to the very latest research news, arming you with the information you need to be a strong advocate.

Share Your Favorites

laptop-and-coffeeWhat are some of your favorite resources – online or otherwise? Please leave a comment and share your thoughts with other readers. If you found something helpful, it’s likely that someone else can benefit from it too!

Be sure to also check out my Helpful Resources, Reading List, Recommended Blogs, and News & Information pages, and stop back periodically for updates. It is my sincere hope that you or someone you know will find this information helpful.

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The Time is NOW: Raise Your Voice to Washington

15 Friday Nov 2013

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

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Alzheimers advocacy, alzheimers funding, alzheimers research

usa2_logo_email_headerDear Friends….

Leading researchers believe we can stop Alzheimer’s by 2025 if sufficient funding is allocated to Alzheimer’s research.

Congress is hammering out the details of the 2014 budget right now and we must convince them to prioritize biomedical research funding before it is too late.

The deep budget cuts – known as “sequestration” – that went into effect earlier this year are slowing efforts to find the cause of Alzheimer’s and to develop effective treatments and therapies to slow, modify, stop, and eventually prevent it.

The NIH’s 2013 budget has already been cut by $1.55 billion and, unless we can convince Congress to change course now, even more drastic cuts will be made in 2014 that will mean fewer research grants and delayed progress in medical breakthroughs.1

Some researchers are being forced to take out personal loans to keep their labs open – a practice that is clearly unsustainable.2

labpicThe budget cuts also mean that fewer research scientists are being trained – we’ve already lost one out of every ten MD-PhD training slots due to sequestration.3

Congress will be trying to reach an agreement on the budget in the next two to three weeks. This blueprint would set spending levels, and without adequate room for biomedical research and other programs, increased funding for Alzheimer’s research will be unlikely.

You and I both know that the squeaky wheel gets the grease. Taking just a minute to  raise your voice now will help ensure that our call for Alzheimer’s research funding can be heard in the halls of Congress.

Click here to ask your members of Congress to reverse the devastating cuts and invest more in biomedical research in the budget they’re creating right now.

Thank you again for raising your voice to stop this devastating disease from claiming more lives and destroying more families.

1. http://www.nih.gov/news/health/jun2013/nih-03.htm
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

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The Long and Winding Road

Marilyn, BA (before Alzheimer's)

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