I was looking at information on the upcoming Public Policy Forum on the Alz Assn site and ran across a nice bio of Joan, with picture. You can find it if you look in the Advocates section.
Thank you for mentioning that. Here is the link to the main Advocate page, if anyone is interested in reading about me or the rest of the advocates listed. http://www.alz.org/summit/forum_advocates.asp
Except for the snow, ice, and cold, I am looking forward to this year's DC trip.
Joan--Steve and I were asked to go and speak to a member of Congress on "what we want". Haven't worked out the details yet, but if we go, it would be great to touch base with you (and anyone else from this site who goes).
Yes, I'd love to meet you. I have had the privilege of meeting other advocates from this site at previous DC Summits. Tony Pesare, Dave and Betsy Howe, Trish and Bob Balfour, Laura and Jay Jones, Dr. Mary Newport and her husband Steve.
FYI- The rooms at The Omni Shoreham Hotel that is hosting the Summit are all booked. They have rooms available at what they are calling an "overflow" hotel - The DuPont. It's 1.5 miles from the Omni.
Marilyn, how were you able to be contacted by somone in Congress to speak about this horrible disease? I want to be an advocate and get politicians at all levels - local, state, federal to understand the VERY limited resources available for EOAD. DH has FTD but he doesn't qualify for any services because of his age (59) and right now our income, although that is changing fast.
Go to the Advocate page on the Alz.website - http://www.alz.org/summit/forum_advocates.asp On the right side, there is a section to sign up to become an advocate. Call your local Alz. Assoc. and ask to speak with the person in charge of advocacy - Ours is called the Advocacy and Public Policy Coordinator. Tell her/him that you want to get involved, and they should take it from there.
Another suggestion is to start on the local and state level. Ask the Public Policy Coordinator about it.
LFL--I was contacted by the local chapter of the Alzheimer's Association. Three years ago, they asked me to speak before a Senate Subcommittee that was sponsoring a bill called the Alzheimer's Breakthrough Act. This year, apparently they want my husband and I to speak to a particular member of Congress. I definitely think the fact that my husband was dx at age 60 with MCI, probable AD, has a lot to do with it--our chapter is at the forefront of publicizing the young onset dementias. I agree with Joan that your local Alz Assn chapter is a good place to start--I work mostly with the Early Stage Coordinator, but each chapter may be organized differently. Good luck and keep us posted!
LFL, my friend! Why not contact our local State Senator who I had contacted in Flemington? I think she would be able to get you started in the right direction, and help you! Also, our former Acting Governor. I feel so badly for you in your predicament, at so early an age. It is only through us speaking out that any attention is paid to the dire need for help! Good luck, and will be in touch personally, but want everyone to see what your needs are and that they have received no recognition thus far.