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Topic I'm booking now!!!!! Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2010.10.20 16:33
Just got my newsletter from PAN (Parkinson's Action Network) on the DC forum Feb/Mar. There are 2 ways to participate: a webcast OR in DC..... Now i don't support PAN, i just just like to keep current on what is going on in PD research and any "action" going on.
Just for fun i went to register for the forum to get info.
They have reserved blocks of rooms at the Omni in DC where the forum will be held. SO i went to see our "special price". It will only cost $239/night, for three nights minimum, most likely four. the airfare, train or gas it will take you to get there and of course if you have any money left you might want to eat. They do serve breakfast and lunch, so at least that is covered.
There is scholarships available. These cover room and transportation. They are also limited to 2 per state or 2 people per state.
Oh yeah .. it cost $200 for the forum.......
If i may rant now..........

This is why OUR voices never get heard. If there is anyone on this board who could really afford to go to a forum like this please raise your hand...........

Yep .. that's what i thought .........

It irks my skin that they put this out there like us everyday caregivers and patients could really go. That is why our voices on health care, drugs and the rest never get heard. Only the rich can afford this forum, and they know nothing of the high cost of drugs, doctors and the rest. They don't have to deal with what facility to put a loved one in as they can afford to do whatever. They can afford to bring in a full time caregiver and not think twice. So how is this representative of the real world.
Yes... they are offering scholarships and you bet i am applying for it... my chances of actually getting it are probably slim and none BUT, i figured what the heck.... i am only one person, but one with a big mouth.

But seriously if there is anyone who wants the info, i will be happy to forward the email to you, if you email me and in the subject put DC forum. My email is pennyv_94@msn.com.

By LOHENGR1N On 2010.10.20 16:50
kk, Really want to get mad? When I was a coordinator for P.A.N. and the DC forum was coming up they were discussing seating. It seemed that some meals were smorgasbord and chairs were at a minimum the year before, so they would see if they could set some out in the hallways! (where we were informed of there being several benches along the walls. Talk about being treated as thirdworld represenitives) Also they cautioned to plan carefully as the schedules were close together for events and those with Parkinson's would most likely tire trying to keep up (as happened the prior years). Yes it all sounds so good but We've got Parkinson's Disease...duh! P.A.N. supposedly represents Us it IS Supposed to be our voice in DC. I could go on and on but is it any wonder why I resigned my position with a bitter taste in my mouth? grrrrrrrr!!!!

By karolinakitty On 2010.10.20 19:39
Yes Lo.. i feel your frustration.... i was in the political arena many years ago and i understand how things go.....we are still in the discussing phase, as i want to learn the ins and outs... i don't have much time to travel or do those sorts of things. I am interested in phone and letter writing... My guy says i need to focus on one thing, where as i want to do about 50.
1) educate the public
2) make disability determination folks have at least some type of education
3) assist those in need, to get help with meds and perhaps financial assistance
4) educate the medical field on what is and is not a part of PD

these are the top ones i could go on......

By Emma On 2010.10.20 22:19
This is unbelievable. karolinakitty, you keep that fire going girl!

By packerman On 2010.10.21 09:46
do they plan a webcast as do NPF and APDA for their conferences?
that would be much more likely to get patient participation.
we usually sign up, watch and sometimes submit questions to the presenters.

By karolinakitty On 2010.10.21 15:47
Yes there is a webcast but you have to sign up for it if you want to participate here is the link i hope it works from this site:

http://thepanforum.org/webreg.htm

By sannph On 2010.10.21 16:10
Well, I guess I won't be booking....just figured a 4 night stay and the forum cost will only leave us enough money to (maybe) buy meds and eat for that month!!!


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