Well, it is 9:30 PM, and I have been up since 4 AM, so I will be going to bed soon. Our day starts tomorrow at 7.
I hope the Candlelight Vigil at the Lincoln Memorial is shown on the news on TV. There were at least 600 advocates from all over the country there, listening to moving and inspiring speeches. Virtual candles lit on the Internet - over 10,000.
David Hyde Pierce spoke at the Vigil - he is a tireless advocate - both his father and grandfather died from AD.
Tomorrow we will get down to work - I will keep you posted on what is going on. Copy and paste this link for daily updates from the Alz. Assoc. - http://email03.secureserver.net/webmail.php?login=1
Guess what? The snow melted, and the temperature is mild.
God bless all of you who are attending this very important conference in DC, and bringing our urgent message to the people who can and should make things happen.
FYI- These are the 3 bills the Alz. Assoc. is focusing on:
Alzheimer's Breakthrough Act (S-1492) (H-3286) - Will increase the federal government's commitment (that means $$$$$$$$$)to fighting Alzhiemer's Disease through research, education, and care.
Alzheimer's Detection, Diagnosis, Care, and Planning Act-not yet a bill - we are looking for co-sponsors in Congress and the senate.
National Alzheimer's Project Act (NAPA) --(S-3036) (H.R.- 4689) - Will establish a National Alzheimer's Project Office and inter-agency Advisory Council responsible for creating a national plan to overcome the Alzheimer's disease crisis.
For information on these bills, and updates on what we have been doing, copy and paste -http://www.alz.org/summit/
Every workshop speaker today emphasized the importance of your personal stories. Thank you for all the posts and e-mails. I will deliver your messages.
I'll have much more information for you when I return. Now I have to go to bed, or I am going to fall asleep on the computer.
oh did we deliver your messages! loud and clear.almost 600 of us from every district and state in the united states. i'll give you more details later. I need a nap. I walked and walked forever today. feel like i've been run over by a truck. joang
Thank you, Joan, for everything you are doing. I am so hopeful that progress can be made and that there is better understanding of the elements of this disease that make it so confoundingly DIFFERENT from many others. I've given some thought to what I would have said, but I would have had more 'fight' in me during the time when we were trying so hard to figure out WHAT WAS WRONG. The mistaken idea that someone is TOO YOUNG to have this disease kept us from having access to the very tests that would have confirmed it. I have to hope that the medical world and the insurance world and the governmental world WAKES UP. Thanks to you and those with you right now, that can happen.
Joan, you are such a good witness to be such a positive ADVOCATE. All of us try to make some effort but you really "Put the metal to the pedal" Thank you so much for starting this site and all the fantastic advocate work. You are terrific. bill
Thank you, but I am just one of hundreds of thousands. And one of almost 600 who made the trek to DC. And right now, all 600 of us are wiped out. Until you've been there, you cannot imagine the pace in that city. Since it was my 3rd year, I knew what to expect, but the walking, walking, walking, running, running, running from one apt. to another is frenetic.
I will have lots to tell in tomorrow's blog, but it won't be posted until the afternoon. I can tell you that I found my voice this year. The first year, I was like a deer in the headlights. I sat in the congressional offices in shock, and just listened to what my colleagues said; the second year, I told a little about my personal story, but this year, I spoke up loud and clear and with confidence. Especially about early detection, physician education, public awareness of the disease, what the disease is, and EOAD. I was paired up in many of the meetings with Laura and Jay Jones, and Laura was excellent in talking about $$$$$COSTS to families.
Check out tomorrow's blog for all the news about the trip. ( After I sleep for about 12 hours)