I am on the email list these days because I posted comments on dementia and Alzheimer's on the Change website. I just got an email from the White House telling me that health priorities will include:
Increase Alzheimer research funding Ensure health care reforms meet the needs of people with Alzheimer's and their families Make Alzheimer's disease a national priority
I guess enough of us showed up signing that letter the Alzheimer's Association did and also commenting on dementia and Alzheimer's on the Change web site, that someone noticed. Notice that "and their families" on the second bullet point.
Re the funding issue--Several years ago the AD research funding was cut--I was told by the Alz Assn it was due to the expense of the Iraq war. Senator Barbara Mikulski put together a bill requesting additional monies for AD research and caregiver support called "The Alzheimer's Breakthrough Act". Sadly, it died somewhere in Congress--let's hope that this new administration can actually accomplish what she tried to do.
On another thread, I told everyone that when I was in DC last May, the atmosphere was of malaise. Every legislator (including our own Senator Nelson) that I met told us the same thing - Washington is at a standstill. It was Lame Duck city. No one was going to start on anything or do anything until a new administration came in. It didn't matter which administration - just that everyone was waiting for a new one. So we've got a new Senate, House of Representatives, and President - let's let them hear us.
OK, I posted comments four times (using two different email addresses ... I firmly believe in stuffing the ballot box!) and I signed the petition, and nobody sent ME an email like that. Humph!
Starling, that is great news. They are asking for comments again ... gonna trot right off and send some more, make sure they know we mean business!
Starling ... I just got an email that had the same priorities -- in exactly the same words -- but it was from the Alzheimer's Association, and those were the priorities that the Assoc had outlined for him to consider.
The Proclamation is now closed, and as of publication, had 52,000 signatures. It will be delivered to the President and other members of the administration over the next few weeks.
Then the email went on to encourage that we "help put Alzheimer's issues on President Obama's healthcare agenda" and gave a link to the change.gov website where we've been posting:
http://citizensbriefingbook.change.gov/
There is a public policy forum scheduled for March 23 in Washington, that they encouraged us to sign up for.
I know Joan and I are planning to attend the public policy forum again this year. I was wondering if anyone else was considering the thought. The more voices they hear from the better.
This is my first post, having been a lurker for about a month after finding the boards totally by accident while doing some ALZ research (found the Coconut Oil thread in Dec. - Now excited to see Dr. Newport's posts 1/28). I am an Alzheimer's daughter (rather than spouse) so hopefully this is allowed. I have been thinking for the past year that there has to be some way to get a BIG WIG - like Oprah - on the Alzheimer's bandwagon - in high visibility. Maybe President Obama is just the link needed to get that moving. Oprah could be the Alzheimer's Czar. She could tackle the Alzheimer's Crisis while the President works on the Economic Crisis.
Thank you for your idea, but I am here to let everyone know that we probably have a better chance with President Obama than Oprah. She has gatekeepers at least as strong as the sharpshooters that guard the White House. I have contacted Oprah, and have been completely ignored. Granted, it was early on - a month or so after I started this website, before it became so well known and highly visible.
I have been told that there are two ways to get to Oprah. The first is to be relentless. Write every week non-stop until her staff finally gives in. The second is to know someone who knows someone who knows her.
I was planning on attending the Alzheimer's Public Policy Forum in DC this year, as I did last year. However, the CEO of my Alz. Florida chapter informs me that, due to budget restraints, she doesn't know if they are sending a delegation from their office. Considering those of us who went last year paid for everything ourselves, I need to talk to her more about it. Check the home page of this website - www.thealzheimerspouse.com - look on the left side, and scroll down to the section of the DC Forum. You can read all about last year's trip.
My suggestions would be - everyone who reads this website - bombard Oprah with e-mails about this site and the desperate need for Alzheimer's awareness and funding. Secondly, do the same on the local, state, and federal level with all of your representatives and senators. Third, log onto www.alz.org., and sign the letter they have that goes to President Obama.
...[sigh]... Oprah's gatekeepers are so strong that they kept the warnings about her thyroid from her for months. Her experienced viewers had spotted her symptoms really early, and were begging her to get tested, literally for months before someone let her know about multiple emails from multiple people all over the world. Frankly, the woman has a goiter!
So much for the idea of asking her to do something, even a show, about the realities of Alzheimer's. Or Alzheimer's caregiving.