Dear M & M,

Please, speak for all of us out there!  I cannot afford to go this time.

I'm so proud to have you too to speak for us.

Any others??

Good Luck.

Peace and Hope,

Lisa

Hi Russ, Hopefully I'll meet you at the 2PM Early Stage affair.

Let's hear more from you on these Boards.

And Russ is correct. It is so powerful to write or go to your local state or congressional office. You meet with either a representative or the person. You introduce yourself and add. I am in the Early Stages of Alzheimer's. Watch their face. 

You are educating them about Early Stage just by presenting yourself. National or your local chapter can let you know what the particular focus at any time is. If we all ask for the same thing, it is more effective.

Going to DC for the Alz. Assoc. is an AWESOME experience. I went in 2004 and spoke before congress and met many, many families that were diagnosed with EO dementias. Alot has changed since then and YES, it is expensive. So strange the Alz. Associ. talks about budgeting and having no money, but just think of the thousands that is spent on programs as this. They would get so many more advocates if they were realistic monetarily. Those that are going, I wish you the best.

Tracy

Camp building Bridges

All organizations have to budget.  Everything is expensive.  In 2004, message boards were not in big use.  I don't know when this message board began, but the earliest names I've seen are from 2006.  The medication I'm on, Exelon patch, did not get approved until 2007.  The Alz Assoc pushed for the EOAD Compassionate Allowance with SSDI.  So a lot has been going on behind the scenes in the dementia world.  

Even if all the Alz Association did was to raise awareness and help caregivers and patients, it costs money.   

My Mother had a saying, "You have to spend money to make money."   

Myriam, did you get a roommate yet?  The Association should be able to hook you up with someone appropriate.

Iris L. 

Yea! YEA !  Glad to hear you are goin Myriam.  I plan to go but at the time don't know yet if my "man" is going with me.  Hopefully your chapter can find you 

Psomeone who is going that you can share a room with.  Do you already have a room reservation?

This is my first year to go and I'm really excited about it!  

No, I haven't made the reservation, yet. Am waiting to hear back regarding my request for some financial assistance. My mother lives, in Maryland, so if worse gets to worst, I'll borrow her car and drive the 1 1/2 hour to D.C. on Mon, Tues and Wed. 

DC has rapid transit that goes into Maryland.  I don't know if there is a subway stop near the Renaissance Hotel.  I'm a native New Yorker so I'm used to public transportation.  Myriam, you can think about drive and park at the station and thus avoid DC traffic.  I lived in DC for four years in the early 1970s.

Iris L.

Will any of this be televised or online?

Iris L.

Click here to get more information: http://www.alz.org/forum/ 
 

I saw this yesterday and wrote a long, personalized reply. Whatever I did, it disappeared! So one last try.

For those of us with the disease, get there by 2 PM on Monday. We have our own session. Several years ago, the author of Still Alice moderated a panel. Since then, it's just been an informal meet and greet.

The opening session is fun. We sit with our state. Each state presents a short overview of it's accomplishments. Then in the evening, we formerly went to a huge rally at the Lincoln Memorial. Many, many busses to get us there, but so impressive. Last year I think there was a different site but it rained and the rally was indoors. Not nearly as impressive but much dryer.  

Afterwards there was a gathering to meet others with food and drinks. I think something different and with a charge is being planned in conjunction with another group. Check above.

Tues is prep day for our Capital visits on Wed. Annually the Association has one or two legislative priorities. We are given instructions on those and also the most effective way to approach our representatives.

Those of us with the disease are a very important part of this. Much needs to be learned by our Representatives about both Early Onset and Early Stage. And it does make an impression when an obviouslly well dressed, articulate person, often 50 or so, introduces themselves by saying: my name is .... and I have been diagnosed with FTD for four years. 

You don't have to worry too much about what to say about the legislation. There is often someone else with the group primed to handle that.

This day you spend a lot of time with your state delegation. For me, it's a renewal of many frienships. 

For those of you new to the game, you can't imagine the welcome you will receive. Again, especially those of us with the disease.

Last year, for the first time, we ADers had a colored circle on our badge. As many of those on the boards know, it's the only possible way to distinguish us from caregivers and other Advocates. Seeing those circles in the halls, on the elevators, etc.  always lead to conversations.   In a few instances to friendships that have lasted ever since.

In the evening was a large sit down dinner with speaker.

The following morning is a buffet breakfast.We are all given large purple sashes to pin on. We get together with our delegation and off we go. Again, smaller busses took us there, since appointments are at varying times.  We visit our own representative or a person from his/her office. We usually tag along with a few more. 

One glorious year we were able to sit in on a congressional hearing about Alzheimer's. Incredible .

There is no formal ending. People leave as they finish their appointments or possibly have to get out to catch a plane or avoid horrendous afternoon going out traffic.

Just the sheer number of people assembled to Advocate for the disease is awe inspiring. Last year I was especially impressed by the number of young people.

You can cut down on expenses a bit by getting as many people as are allowed in a room and by choosing a hotel or whatever (friends) that are less expensive. Remember you are in DC. The metro is clean and runs remarkably on time. The frequency of trains and the # of changes needed to get to the hotel site, do check out beforehand. Fares depend on the distance travelled. You swipe a prepaid card before entering and when exiting. 

Myriam, have you made your arrangements for the convention? 

Have a great time! 

Please lift a glass of sparkling water or juice for me! 

Iris L. 

Mimi. you did a great job of describing the the national  conference. It is a busy but rewarding and fulfilling experience . As you mentioned it is not a cheap date but is worth it. 

My first year we attended as an Early Stage Advisor and this year as an Ambassador. It is a very busy few days but worth every minute. My wife, Diane will accompany me and is a very active advocate and participant at the conference. 

I know that not everyone can attend in Washington but everyone has an opportunity to send an email to your Congressional representative or to call their office and thank them / ask them   to support for the Nation Alzheimers Project Act. I have attached a link to the NAPA Act report. Hopefully you can download it from the link. If not just send me an email at russ.belleville@gmmail.com and I will email you a copy.

Best Regards, Russ

Thanks Russ,

Look for me at the Early Stage Conference at two on Monday.

For others, i read something about something being on Facebook this year. So those who do FB, check it iout. And I suppose if it's there, it's on other chatter sights.

Others, beginning Monday evening, try googling Alzheimer's Assoc. National Forum.

So, I can't wait for more reports from DC.

Is this always in DC?  I was telling DH about it and he said "lets plan on attending next year, it would be great."  There you have it......

Hey Eagle Mom,

Yes, it's always in DC, because the main focus is on speaking with our Congressional Representatives, en masse. 

Any possibility of coming this year? Go to the web site above, and just for the heck of it, find out if the hotel still has room. Others commute from the burbs or other local hotels.

Can you get your act together that fast? 

Pat Summit is to be one of the speakers!

Eagle, you will both be missed!  So sorry about the funding issues.  That always adds so much more stress.

When you get things straightened out, and you will ,   start saving those dimes for next year!  That is what I did.  Didn't go last year, but planned for this year.

Now I'm on my way Monday.  I hope to put faces with names...but worry about my memory keeping it straight and it doing much good.  I'll give it lots of tries anyway!

We will keep you and DH there in our thoughts.  Back with reports.

Mimi asked me to spread the word to all wear purple Tuesday for Alzheimer's Day.  We will be doing so in DC.