http://www.arthritis.org/advocacy/Advocacy_Summit/default.as p
So who lives near DC?!?! Will you go for us??? Pleeeaaassseee???
Wouldn't be a bad idea to try taking up a collection from the board to sponsor sending someone as a spokesperson if there's no one who can go on their own. I do wish we could send someone.God Deanna, it would be great if YOU could go. Ya know? How about Deanna, Roxy and Katie! What is the total cost of all of this?I'm glad someone threw Katie in the mix, the little trouble maker.
Yes, I love you, Katie.
I will donate a round trip United frequent flier ticket if someone wants to go to the conference. I looked at the link. The registration deadline is Jan 22nd.
Alan
Oh Alan that would be awesome. I don't know who COULD do though. I can't take time off work yet, as I'm not eligible for my personal leave until April 1st, I believe. :( Is anyone avlb. on those dates???I'm having knee surgery on Feb 22nd. Does that get me off the hook? However, I do really feel strongly about someone needing to speak up about this, not that anyone could tell.
Alan, that's a gracious offer. I hope someone does go. Maybe Crunchy or Roxy? Roxy has been politically active before. The problem with all three of us is that that long of a trip would be really hard physically.
There's got to be a way for someone to do it though.
You know, I hate to say this BUT. Even if we can't make it this year - well it looks like a yearly event(?) Maybe we can start planning now for next year. It's an idea.Does seem a little close to the event. But maybe someone will speak up to go.
If someone can't make it this year, maybe we can really plan a strategy for next year and come out all gangbusters. I think one reason RA doesn't get much note is that the people affected by it are so sick that it's hard, if not impossible, to get out there and do much activism. When you are dragging yourself through each day and that takes all you've got, there's not much left.
But together, we could do something which individually might seem impossible.
Don't give up on this idea, Katie. It's about the future of all of us.
Look, I would go if there was a way to get me there. I think it is very important for our voices to be heard. I just don't know that I would be the best representative and I have no money. But a few days ago, I had this dream about testifying in front of a Senate committee, probably because so many of you have been pushing me forward. I was sitting in a wheelchair and giving them hell. Part of me would like to see that dream come true. Part of me wants to just crawl away somewhere and take my pain killers like a good little girl.
But maybe there is someone that is stronger than me to do this.
Deanna - youwould be the obvious person to go. I guess your surgery dates are non negotiable but a talk to the surgeon may make him sympathetic to our cause & he could alter his dates by a few days. Surely the Arthritis Society would step in to help - without us they wouldn't get paid - one of those forums that businesses do for seminar where they link up by live television could be an option, dont really know how they work. Another year away seems like a long time. With Alan's wonderful donation we are part way there & I am sure the rest could be sortedd.There are a lot of things about your situations and backgrounds that would make Deanna or Katie ideal. And you both raise good reasons why it might be impossible. If someone else--Crunchy, Grammaskittles, Roxy, Alan, others??--can go this year, I'll make a donation. (Alan, what a wonderful and generous idea yours is!) I could make a contribution toward a hotel room.
But it was a wise point that was made that it makes sense to plan for next year if having a delegate this year isn't quickly feasible. With time to plan in advance, whoever goes could be arranging themselves around that date, and we could spend time organizing what we'd like to say, studying the issues, collecting important stories from the board, not to mention arranging the financial side.
If someone from this board doesn't go this year, is there something we could still do to have a voice this year that would have more impact than a few people randomly contacting their congressman (though that would be good in itself)? A common message that many of us would send to our senators? A way to have a statement sent to the conference even though no one can attend?
I'm such a non-activist I don't really know where to start.
Deanna, I love that dream you had. And I think I understand the push and pull you feel between maintaining your privacy and speaking what's straining to come out of you.
If we could find someone who was already going, we could start a thread here of all the things we think are important and then send a copy of it with them. Maybe we could even get the topic thread put up on the other forums and all of them could be taken.
I don't know exactly how we find out, but maybe someone from the Arthritis Foundation could help with that. We are anomynous, not voiceless.
OMG i so want to go. ive been in this becoming an activist mood lately. but lack of funds will make me stay home. so i'll just continue w/ my letters instead Okay, I made a phone call for some information about this summit. I noticed that there are stipends available for certain key congressional districts, and I was hoping that we might be able to get some assistance for Deanna to attend. Unfortunately Arizona is not one of the key districts.I think though if someone can go, it would be helpful especially if none of our issues are being addressed. You know it's like that old song some of us sang in high school, "It only takes a spark to get a fire going."
Kelsaysmommy,
If you're serious about going, I'll pay the registration fee too. PM me and let me know. Sounds like a couple of others would throw in some to help with other expenses.
Alan
You guys I'm in awe. I found that link, and just thought it was something worth looking at for us. And maybe next year we would have someone who could go. I never dreamed you all would jump in head first like this and have the desire to just DO IT. I'm amazed and almost in tears. What an amazing bunch of people we have here! I so wish I could go, if they had just set the dates for April I'd be golden! :(I am very serious about going. I am just trying to convince my husband it is a good idea. If i do end up going, i am going to stay with some friends of mine, they live about 45 min from DC so that will take some cost away also.
Alan- You are awesome! All of you guys are a great bunch of people. I will let you know what my husband says. I dont think its going to be an issue.
This is a huge thing for me if i do end up going and flying out. I am scared to death of flying and flying out east to top it off.
Oh but flying is FUN!!! :) LoL I so hope you can go! I'm so PROUD OF US!! LoL What a team, eh??Just wanted to make sure you understood the plane ticket is only for United Airlines. If you let me know what city you would be flying out of I can tell you what kind of connections are available...it might influence your decision.
Alan
Im in illinois, so i could fly out of either Ohare or MidwayOhare is a big hub for United so there should be lots of non-stops to DC...that makes it a lot easier. When I was in graduate school I spent 3 years in Chicago...after 3 bitter winters we moved to California!
Alan
There are 8 non-stops per day. It's only a 600 mile flight from Chicago to DC...less than 2 hrs.Wow what a bunch of activists we are - there is still lots of crunch in our old bones. Thank you Alan & all of you - now we have a chance to be heard & we will be heard & not before time as well. YIPPPPEEEEEEkelsaysmommy, will you need a car when you get there?Some of the poetry that you guys post here should go to this conference either with kelsaysmommy or the virtual route. It says an awful lot that couldn't be said as well any other way. no i wont need a car, i can either have my friend drop me off or use his car. either way i think ill be fine I am hoping to get to speak in d.c. I was thinking about getting a petition together and getting people from my area to sign it, and take it to the confrence. Any ideas on what to write in the petition? I am REALLY REALLY hoping to get to speak there, is there a limit to the people, do you think I called to late??????You guys are all so great!! I love the spirit here. Count me in for a donation of 0.00 to help with someones expenses... Just let me know where I should send it and I'll be happy to!!I can't even begin to say how excited I am about the possibility of someone being able to go. I can't contribute money, but my heart is with you.
Please make them realize how serious this illness can be for some people. I think that gets down played far too much.
I would suggest that those who want to go PM those that have offered to help financially to make some arrangements. Most people don't want to, and probably shouldn't, post phone numbers or addresses on the open forum.
Alan
Does anyone have any last minuite fundraising ideas? They are working on trying to get me a partial scholorship, but i have to find a way to come up with the rest on my own. It is going to cost 0 for the hotel, and 0 for the summit itself! If there are any ideas, please, please, please post it!!!!!!!! 0 for the hotel!?!? Do you HAVE to stay at that hotel? I'm telling you, if you find a hilton brand, I can probably get you set up!!! Let me know...there are alot of hilton brand hotels, but they are all booked! I couldnt even get a rate!:( Thats so sucky. Were you looking online, or calling? What area should I be looking at in DC? I haven't been there in AGES. If you give me that info, I can try calling them. You never know. The more I got to thinking about it, with me ACTUALLY being a Hilton employee, and ACTUALLY having RA....I'm going to ask my boss if he would talk with me to them, and maybe even get the room comped...I don't know though...it's a nice thought. LoL So what area am I looking at??!!?I looked up avlb. on our employee side, there are SEVERAL hotels that I can book, at a night. Please, someone take advantage of this if you are going to go!! I can book them at any time, and would only need to know 24 hours prior to the day of arrival if we have to cancel them. With tax for 2 nights, the total would be .31. I am allowed to book 2 rooms, and I know I can get my boss to clear the use of the passport by a non-hilton employee, given the circumstances.
Please please please let me know. The registration cut off for the event is the 22nd of January. So if I don't see anyone jumping for this by then, I'm not going to book it.
**if you were going to try to book a room yourself, it looks like the average price in that area is about 0 a night....just FYI***
the hilton embassy row and the hilton washington are the closest.My e-mail is makemelaff22@yahoo.com. Email me the stuff you need to know, and if it is ok, i would like to send you somthing from there for doing such an awsome favor for me!!!!!!!!!!!!!Okay, I have to book them while I'm at work, so I will do that tomorrow (I'm off today) then e-mail you the information, for now I'll just put it all under my name and info, because I will have to talk to my manager about changing the name under the circumstances, then mailing them the right passport. (Hilton is weird...lol) :) YAY!
THANK YOU SOOOOOOOO MUCH!!!!!!! My parents wernt sure we could go because of the cost of the hotel, but now because of you i can go!!! I dont know how to thank you, but I will find a way! This means so much to me!!!!!!! THANK YOU!!!!!!!!!!!!!!!!!!!!!!
I just wanted to tell you all how proud I am of you guys for jumping on this with so much heart. I am so excited that this is really going to happen. I would love to go but it just isnt feasable for me...but for those of you are going to make it happen...BRAVO!!!!!! This is just absolutly wonderful news!!!!!!
Worst case scenario, I can only do a friends and family rate, which would make it appx 4-135 for 2 nights. Kelsaysmommy, I sent you a PM with some information I need to get the ticket, etc. Alan Katie, could you go ahead and book a room for me? Do you know where the hotel is at? And my MIL is going to pay for it how should she go about doing that beforehand? THanks again! My RD of 8 years contacted me 2 days ago. In short he asked me to go to the summit in DC. Reason being due to my case being so complex and quickly changing it would really grab everyone's attention. The only thing is I don't have the money to go. We're talking 0.00 for me to go, stay for both conferences, and come home. I now have a Paypal acct at Rando121@gmail.com just to make things easier for you all. So I just hope you guys can help me! -Randy
Fred said they need a teen age attendent as at this point they don't know of any going. Only their parents. You know their parents only know so much about how life is with JRA.
Friends,
Help me help the kids my age when I was diagnosised. Please. Don't make them go thru hell like I did for that first year because a lack of understanding from teachers. They deserve better than that and you know it. I hate to travel, scared of heights my doc is even going to give me something to knock me out a few hours! But do you know why I still am going? To help the kids because at this moment they have little to none. The Conference is in Washington DC over a weekend near the end of febuary. In order for me to get the hotel at the Arthritis Foundation's gift rate I have to have a room with my name on it by January 22nd. aAfter that the price goes up.
I can make it on 0.00 but I don't know if I can without that special rate from the AF.
Friends please help me help us! I have been certificated from the state of TN for being a Peer Mediator, Crisis Counsilor, Fire Fighter, and I have done advocacy work apprentincing under my own advocate group so I am also a Advocate. That is why we have a big chance to get some big words thrown in in a polite way. Come help me help us out and help me help the chidren. Because God willing, if there is one child that doesn't have to go thru what I have, then my life has ment something and most certainly was worth this trip and my fear of heights!
Please Help!
-Randy
Please help.
Thanks.
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