[paula_w]

I had a very good time at PAN this year. I didn't go to the last one and since they only have them every other year now, it had been quite awhile since I'd seen some dear friends.

Those older buddies are dwindling in number. It's safe to say we are officially the senior members of the activist pwp community. I met very young people. One [ want to call her a little girl but she was maybe 40 from Hawaii looked much younger - pkell please correct the age if you see this.] She couldn't even talk about it without crying. When i told her i was 61 she perked up and pam , who was there with us looks far less parkinonian than i do. i told her i was her age and probably younger at dx and still saw my children gaduate from high school, graduate from college [one still in progress] and am helping to raise a grandchild who is 7 now. it it feels so good to see their faces relax. i told her i missed hawaii and had gone to grad school there. she said it's so polluted from Kilueia volcano, which has been erupting since before i left in 1984. it began in 1983 and is taking a renewed burst of power. i have experienced the VOG and it is quite troublesome to breathe with it hanging in the air.

I also liked the issues at PAN this time. For years it was all embryonic stem cells and I was trying to convince myself they were the answer. This time there are two new important asks.

Support S. 425 - introduced by Sen. Mark Udall on monday and already had a number and was going to committee by the time we went to the hill on wednesday. he talked to us on monday and said he was going up to introduce it and he did.

This bill is called a surveillance act but it is not surveillance of people - this bill will finally give us a registry. it is so very important! it made it thru the house and by one vote failed in the senate last year. so they have to start over again. this time they are starting in the senate and hoping to still have the house. we've been using the 1.5 million as our population number for 10 yrs.we know there are many many more.

Two things about this bill:

it is data surveillance - not people surveillance -it's a database and they should be building databases instead of buildings named after senators [Arlen spector memorial bldg mentioned- not sure if it is true] you get the idea tho. Obama has requested funding for this. i think he requested 5 million a year.

forgot the second thing - editing it in. there is no means by which your identity can be learned. it's identity proofed; identity free. etc.


it was so nice to sit and talk on the same side. it made a tremendous difference to me- i said i was going to attend PAN at the request of someone but no way was i going to trudge all over the hill and say empty words to republicans who didn't agree. But it wasn't like that.

the second ask is Cure All Neurological Disease or CAN - as you can see in both bills multiple illnesses are included. obama has requested 50 million the first year and 100 million the next for rhis bill.

NETRP is the military program that works on Parkinson disease and gets high qualitiy research projects that spill over from places like MJFF. It comes up every year for refunding. this time we are just trying to maintain the 26 million even tho the world is very unstable. it's hard to ask for research money when we have a treatment and there is so little money. But there is massive waste and they must cut something for everything they begin to fund. It can't be that hard to find the waste, but who is doing this? wonder if we could find it on our own ....that would be worth some internet time. then when we ask for money with one hand out we could then bring out the other hand with here's where we think you might get it. We need to empty the trash and start clean. oh so much to do.

Conductor 71, i used your picture in every meeting on the hill from our proposal booklet for marketing the neurowriters book....a full page of you with your son. I said "this is what parkinsons disease looks like - this girl has pd." it is not an old person's disease. it perhaps used to be due to aging....but we are dealing with a toxic world. and no age is safe.


best time i ever had there. i actually enjoyed the meetiings. not all of us were completely behind escr. Marco Rubio needs to be communicated with. he has a great health aide and there is no reason why we can't repair some of the damage that the hatred of Pres, Bush has caused. I see marco rubio as being a vice pres. candidate and he had a dynamic office in the works...he was in with the press as we visited his aide.

Thanks to PAN and Amy Comstock Rick for a great forum and to all my old buddies...try to make it to Shake Rattle and Roll . it's a dance and no meetings.