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From the Desk of George Vradenburg: Please Take Action
23 Monday Dec 2013
Posted in Advocacy and Awareness, Research, USAgainstAlzheimer's, Washington
23 Monday Dec 2013
Posted in Advocacy and Awareness, Research, USAgainstAlzheimer's, Washington
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17 Sunday Nov 2013
November 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.
The Alzheimer’s Association offers several excellent tools including:
Did 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:
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.
If 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.
Another 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.
What 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.
15 Friday Nov 2013
Posted in Advocacy and Awareness, Research, USAgainstAlzheimer's, Washington
Dear 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
The 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.
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