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Alzheimer’s Study Group Report 2009 Alzheimer's Disease Facts and Figures Report BLOGS: JOAN'S BLOG - FRIDAY, MARCH 26, 2009 - A SNEAK PEAK AT OUR WASHINGTON DC EXPERIENCE There is much to tell about what was, by most accounts, an extremely successful Alzheimer's Public Policy Forum this year. The clearest, most organized way for me to present all of the information is to first list the events, and then give you commentary. Today's blog will simply list highlights of some of the events and a few comments and pictures. Tomorrow, I will go into depth about the information gleaned from each event. Early Stage Summit - There were approximately 60 attendees living with Early Stage Alzheimer's Disease - this summit was their chance to present and discuss their own stories, as well as their perspective on treatment . Our member, Trish Balfour, and her husband Bob, were panelists. The keynote speaker was Lisa Geneva, author of Still Alice. Candlelight Vigil at the Lincoln Memorial - This vigil was held in honor or all those living with, and having died from, Alzheimer's Disease. There were two speakers chosen from the entire country to tell their stories, and our own member, Tony Pesare, was one of them. Look for the full text of his speech in an upcoming blog. Introduction of Upcoming HBO Special on Alzheimer's Disease -Discussed and introduced by Maria Shriver, whose father has Alzheimer's Disease - I will have a LOT to say about her warmth, intelligence, and graciousness. Senate Hearing on the Alzheimer Study Group Report- panelists were Justice Sandra Day O'Connor, Former Speaker of the House Newt Gingrich Our trip to Capitol Hill to bring the Alzheimer's Agenda directly to our legislators - The bonanza of this year was that our visit coincided with the release of the Alzheimer Study Group report, which supported the Alzheimer cause above and beyond our wildest dreams, and called for bold, decisive action on care delivery, payments, and research. And YES, our stories were IMPORTANT. I will have details on that also. On a lighter note - just to PROVE that I DID walk up those hundreds of steps to the Lincoln Memorial, I asked a kind tourist to take my picture with President Abe, so here we are: Tune in tomorrow for much more detailed information. Feedback to joan@thealzheimerspouse.com ©Copyright 2009 Joan Gershman JOAN’S MON/TUE. BLOG– March 30/31, 2009 - ALZHEIMER’S DISEASE – PAST, PRESENT, AND FUTURE- OPINION FROM THE DC FORUM I have listed links to the important reports and videos from the Alzheimer’s Public Policy Forum above the Daily News. But now it is time for me to give you the heart and soul of my Washington experience Whenever Alzheimer’s Disease is discussed in a political, medical, or scientific context, the first theme one hears is – OLD. Most of the speeches I hear start with the words- “One in 7 people who reach 80 years old will develop AD, and that number increases to one in four people when a person reaches 85.” It is my opinion, and remember, this is just my own opinion, that as soon as a listener hears the age “80”, and even worse, “85”, they tune out. Shut down. The thinking, whether one is willing to admit it or not, is – “Well, they’re 80. They’re old I believe that attitude of dismissing an “elderly” disease has been at the heart of the “back burner” policy for Alzheimer’s Disease. So what has changed? Why is AD suddenly receiving so much media attention? Why did a high powered bipartisan commission, consisting of Newt Gingrich The answer lies in the numbers – age and monetary. Due in no small part to the advocacy of all of us caregivers affected by Alzheimer’s Disease, and especially to the advocacy of those with AD in the early stages who are able to speak for themselves, the Baby Boomer legislators woke up to a staggering fact – “Uh oh. It’s not just my 85 year old grandmother. IT COULD BE ME Now, if the fear of developing Alzheimer’s Disease themselves at a “younger” age of 50-65, did not get the attention of the legislators, the staggering monetary cost This year, the legislators, their aides, and their assistants listened to us. The atmosphere and attitude on Capitol Hill was different than last year. Please click this link to read the blog that states the 2009 Alzheimer’s Association’s legislative priorities, and know that they are backed 100% by the ASG report. And finally, what can we do to make sure that our cause stays on the front burner? I was not simply trying to “rally the troops” when I said in previous blogs that OUR STORIES COUNT. Speaking and writing from the heart make a difference. A huge difference. We Florida delegates were paired up when we went to our “face to face” legislative appointments I would be remiss if I did not acknowledge the contribution of our member, Tony Pesare, whose speech at the Candlelight Vigil MESSAGE BOARD TOPIC: Important Ideas and Opinions from the DC Forum Feedback to joan@thealzheimerspouse.com
©Copyright 2009 Joan Gershman MORE PICTURES OF OUR WEBSITE MEMBERS:
Betsy and Dave Howe also attended, but I did not manage to get a picture of them. Dr. Mary Newport and her husband Steve, were part of the Florida delegation. If you scroll up to the first blog, you will see them on the right hand side of the Florida Delegation picture. She is standing; he is sitting. ©Copyright 2009 Joan Gershman
The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.
The Alzheimer Spouse LLC 2009 All Rights Reserved
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