Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Beth, This year the days were off. Normally it's like Thursday to Sunday. This year it is Sunday to Wednesday RobbinSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 -UGHHH, I just checked and its 2000 miles from MN, Thats too long of a drive and I HATE to fly ((( I hope its wrong....and its way expensive out there. hugs Helen and (9,systemic) -- In , " hburger64 " <hburger64@...> wrote: > > -Another LONG drive from MN, but at least its in the opposite > direction. > > Im hearing on another list, Orange County. So. Cal. > > I guess we will see if its true in a couple of weeks > > hugs Helen and (9,systemic) > > -- In , ajaomom@ wrote: > > > > where and when???? the girl scouts are trying to plan a trip, > and we are > > hoping to plan around it............................... > > > > > > > > ************************************** See what's free at > http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Lets just say if its in Orange County.. I will for sure be at that AJAO!! --- hburger64 <hburger64@...> wrote: > -UGHHH, > > I just checked and its 2000 miles from MN, Thats too > long of a drive > and I HATE to fly ((( > > I hope its wrong....and its way expensive out there. > > hugs Helen and (9,systemic) > > > > -- In , " hburger64 " > <hburger64@...> wrote: > > > > -Another LONG drive from MN, but at least its in > the opposite > > direction. > > > > Im hearing on another list, Orange County. So. > Cal. > > > > I guess we will see if its true in a couple of > weeks > > > > hugs Helen and (9,systemic) > > > > -- In , ajaomom@ wrote: > > > > > > where and when???? the girl scouts are trying > to plan a trip, > > and we are > > > hoping to plan around > it............................... > > > > > > > > > > > > ************************************** See > what's free at > > http://www.aol.com. > > > > > > > > ________________________________________________________________________________\ ____ Choose the right car based on your needs. Check out Autos new Car Finder tool. http://autos./carfinder/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 I have been told that it will be in San Diego. On Jun 21, 2007, at 2:07 PM, Salvucci wrote:Lets just say if its in Orange County.. I will forsure be at that AJAO!!--- hburger64 <hburger64hotmail> wrote:> -UGHHH, > > I just checked and its 2000 miles from MN, Thats too> long of a drive > and I HATE to fly (((> > I hope its wrong....and its way expensive out there.> > hugs Helen and (9,systemic)> > > > -- In , "hburger64"> <hburger64@...> wrote:> >> > -Another LONG drive from MN, but at least its in> the opposite > > direction. > > > > Im hearing on another list, Orange County. So.> Cal. > > > > I guess we will see if its true in a couple of> weeks> > > > hugs Helen and (9,systemic)> > > > -- In , ajaomom@ wrote:> > >> > > where and when???? the girl scouts are trying> to plan a trip, > > and we are > > > hoping to plan around > it...............................> > > > > > > > > > > > ************************************** See> what's free at > > http://www.aol.com.> > >> >> > > __________________________________________________________Choose the right car based on your needs. Check out Autos new Car Finder tool.http://autos./carfinder/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 any word on dates??? I REALLY need them to avoid the holiday next year. I'll never be able to get that whole week off I also really want Hannah to experience a conference. Sending prayers & happy thoughts, Beth :-) Re: AJAO 2008 I have been told that it will be in San Diego. On Jun 21, 2007, at 2:07 PM, Salvucci wrote: Lets just say if its in Orange County.. I will forsure be at that AJAO!!--- hburger64 <hburger64hotmail> wrote:> -UGHHH, > > I just checked and its 2000 miles from MN, Thats too> long of a drive > and I HATE to fly (((> > I hope its wrong....and its way expensive out there.> > hugs Helen and (9,systemic)> > > > -- In , "hburger64"> <hburger64@...> wrote:> >> > -Another LONG drive from MN, but at least its in> the opposite > > direction. > > > > Im hearing on another list, Orange County. So.> Cal. > > > > I guess we will see if its true in a couple of> weeks> > > > hugs Helen and (9,systemic)> > > > -- In , ajaomom@ wrote:> > >> > > where and when???? the girl scouts are trying> to plan a trip, > > and we are > > > hoping to plan around > it...............................> > > > > > > > > > > > ************************************** See> what's free at > > http://www.aol.com.> > >> >> > > __________________________________________________________Choose the right car based on your needs. Check out Autos new Car Finder tool.http://autos./carfinder/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 It was in San Diego in 2004 - (unless I am confused about the year) we had a great time (except for the fact that began to flare while we were there), but it seems soon to repeat a location. We have enjoyed every conference that we have attended - but my fondest memories are of the one in Minneapolis - but maybe that's because it was our first conference. I'd love to go back there! Val Rob's Mom (9,systemic) Re: AJAO 2008 I have been told that it will be in San Diego. On Jun 21, 2007, at 2:07 PM, Salvucci wrote: Lets just say if its in Orange County.. I will forsure be at that AJAO!!--- hburger64 hburger64hotmail> wrote:> -UGHHH, > > I just checked and its 2000 miles from MN, Thats too> long of a drive > and I HATE to fly (((> > I hope its wrong....and its way expensive out there.> > hugs Helen and (9,systemic)> > > > -- In , "hburger64"> ..> wrote:> >> > -Another LONG drive from MN, but at least its in> the opposite > > direction. > > > > Im hearing on another list, Orange County. So.> Cal. > > > > I guess we will see if its true in a couple of> weeks> > > > hugs Helen and (9,systemic)> > > > -- In , ajaomom@ wrote:> > >> > > where and when???? the girl scouts are trying> to plan a trip, > > and we are > > > hoping to plan around > it...............................> > > > > > > > > > > > ************************************** See> what's free at > > http://www.aol.com.> > >> >> > > __________________________________________________________Choose the right car based on your needs. Check out Autos new Car Finder tool.http://autos./carfinder/ AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Val: I would love it to be in the mid-west!!!! Of course I'm a Wisconsinite so I might be biased. LOL. Of course if it is San Diego I will start saving now. Way to far to drive for us. As soon as dates are announced would someone let me know. I can ask off for dates 11 months in advance. Sending prayers & happy thoughts, Beth :-) Re: AJAO 2008 I have been told that it will be in San Diego. On Jun 21, 2007, at 2:07 PM, Salvucci wrote: Lets just say if its in Orange County.. I will forsure be at that AJAO!!--- hburger64 hburger64hotmail> wrote:> -UGHHH, > > I just checked and its 2000 miles from MN, Thats too> long of a drive > and I HATE to fly (((> > I hope its wrong....and its way expensive out there.> > hugs Helen and (9,systemic)> > > > -- In , "hburger64"> ..> wrote:> >> > -Another LONG drive from MN, but at least its in> the opposite > > direction. > > > > Im hearing on another list, Orange County. So.> Cal. > > > > I guess we will see if its true in a couple of> weeks> > > > hugs Helen and (9,systemic)> > > > -- In , ajaomom@ wrote:> > >> > > where and when???? the girl scouts are trying> to plan a trip, > > and we are > > > hoping to plan around > it...............................> > > > > > > > > > > > ************************************** See> what's free at > > http://www.aol.com.> > >> >> > > __________________________________________________________Choose the right car based on your needs. Check out Autos new Car Finder tool.http://autos./carfinder/ AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 --val, and we would LOVE for you to come back here!!! But its not going to be here anytime soon (( The Minneapolis one was before I even knew kids could get arthritis. I just realised that last monday its been 4 years since nick was DX. wow! hugs Helen and (9,systemic) p.s hows Robbie doing???? - In , carneyval@... wrote: > > > It was in San Diego in 2004 - (unless I am confused about the year) we had a great time (except for the fact that began to flare while we were there), but it seems soon to repeat a location. We have enjoyed every conference that we have attended - but my fondest memories are of the one in Minneapolis - but maybe that's because it was our first conference. I'd love to go back there! > > Val > > Rob's Mom (9,systemic) > > > Re: AJAO 2008 > > > > > > > > I have been told that it will be in San Diego. > > > > > > > > > > > On Jun 21, 2007, at 2:07 PM, Salvucci wrote: > > > > > > > Lets just say if its in Orange County.. I will for > sure be at that AJAO!! > > > --- hburger64 <hburger64@...> wrote: > > > -UGHHH, > > > > I just checked and its 2000 miles from MN, Thats too > > long of a drive > > and I HATE to fly ((( > > > > I hope its wrong....and its way expensive out there. > > > > hugs Helen and (9,systemic) > > > > > > > > -- In , " hburger64 " > > <hburger64@> wrote: > > > > > > -Another LONG drive from MN, but at least its in > > the opposite > > > direction. > > > > > > Im hearing on another list, Orange County. So. > > Cal. > > > > > > I guess we will see if its true in a couple of > > weeks > > > > > > hugs Helen and (9,systemic) > > > > > > -- In , ajaomom@ wrote: > > > > > > > > where and when???? the girl scouts are trying > > to plan a trip, > > > and we are > > > > hoping to plan around > > it............................... > > > > > > > > > > > > > > > > ************************************** See > > what's free at > > > http://www.aol.com. > > > > > > > > > > > > > > > __________________________________________________________ > Choose the right car based on your needs. Check out Autos new Car Finder tool. > http://autos./carfinder/ > > > > > > > > > > > > > > ______________________________________________________________________ __ > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 -Beth, Im with you. Chicago would be awesome!! but the conferences are put on by the local chapters so the conferences are always going be in areas where they have large and active chapters. In the past they put on regional conferneces back in the late 1990's and early 2000's. I think 2004 was the 1st national one and now they just do one national one a year. 2004 San Deigo 2005 Rhode Island 2006 Atlanta 2007 Hershey 2008 unsure but sounds like West coast. I would be nice if they let everyone know where the are going to be a few years in advance, so people can decide which to go to, if attending each year is not possible. Im with you... we need a mid- west one!!! hugs Helen and (9,systemic) -- In , Beth Yohnk <yohnkmom@...> wrote: > > Val: > I would love it to be in the mid-west!!!! Of course I'm a Wisconsinite so I might be biased. LOL. Of course if it is San Diego I will start saving now. Way to far to drive for us. > > As soon as dates are announced would someone let me know. I can ask off for dates 11 months in advance. > > Sending prayers & happy thoughts, > Beth :-) > > > > Re: AJAO 2008 > > > I have been told that it will be in San Diego. > > > > > > > On Jun 21, 2007, at 2:07 PM, Salvucci wrote: > > > Lets just say if its in Orange County.. I will for > sure be at that AJAO!! > > > --- hburger64 hburger64@...> wrote: > > > -UGHHH, > > > > I just checked and its 2000 miles from MN, Thats too > > long of a drive > > and I HATE to fly ((( > > > > I hope its wrong....and its way expensive out there. > > > > hugs Helen and (9,systemic) > > > > > > > > -- In , " hburger64 " > > ..> wrote: > > > > > > -Another LONG drive from MN, but at least its in > > the opposite > > > direction. > > > > > > Im hearing on another list, Orange County. So. > > Cal. > > > > > > I guess we will see if its true in a couple of > > weeks > > > > > > hugs Helen and (9,systemic) > > > > > > -- In , ajaomom@ wrote: > > > > > > > > where and when???? the girl scouts are trying > > to plan a trip, > > > and we are > > > > hoping to plan around > > it............................... > > > > > > > > > > > > > > > > ************************************** See > > what's free at > > > http://www.aol.com. > > > > > > > > > > > > > > > __________________________________________________________ > Choose the right car based on your needs. Check out Autos new Car Finder tool. > http://autos./carfinder/ > > > > > > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 We had such a wonderful time in San Diego... I would have to say that so far it has been our favorite conferece. I am sure it's because it was our first, but we had such a fantastic time The Pranke's (all 5 of us - eeck) will be there for sure!!! Alia and Caroline, age 5, poly and uveitisSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 I thought the one in Minneapolis (2002) and the one in burg (2003) were both Nationals - but they may have been regional - I don't know. Val Rob's Mom (9,systemic) Re: AJAO 2008 -Beth, Im with you. Chicago would be awesome!! but the conferences are put on by the local chapters so the conferences are always going be in areas where they have large and active chapters. In the past they put on regional conferneces back in the late 1990's and early 2000's. I think 2004 was the 1st national one and now they just do one national one a year. 2004 San Deigo 2005 Rhode Island 2006 Atlanta 2007 Hershey 2008 unsure but sounds like West coast. I would be nice if they let everyone know where the are going to be a few years in advance, so people can decide which to go to, if attending each year is not possible. Im with you... we need a mid- west one!!! hugs Helen and (9,systemic) -- In , Beth Yohnk .> wrote: > > Val: > I would love it to be in the mid-west!!!! Of course I'm a Wisconsinite so I might be biased. LOL. Of course if it is San Diego I will start saving now. Way to far to drive for us. > > As soon as dates are announced would someone let me know. I can ask off for dates 11 months in advance. > > Sending prayers happy thoughts, > Beth :-) > > > > Re: AJAO 2008 > > > I have been told that it will be in San Diego. > > > > > > > On Jun 21, 2007, at 2:07 PM, Salvucci wrote: > > > Lets just say if its in Orange County.. I will for > sure be at that AJAO!! > > > --- hburger64 hburger64@...> wrote: > > > -UGHHH, > > > > I just checked and its 2000 miles from MN, Thats too > > long of a drive > > and I HATE to fly ((( > > > > I hope its wrong....and its way expensive out there. > > > > hugs Helen and (9,systemic) > > > > > > > > -- In , "hburger64" > > ..> wrote: > > > > > > -Another LONG drive from MN, but at least its in > > the opposite > > > direction. > > > > > > Im hearing on another list, Orange County. So. > > Cal. > > > > > > I guess we will see if its true in a couple of > > weeks > > > > > > hugs Helen and (9,systemic) > > > > > > -- In , ajaomom@ wrote: > > > > > > > > where and when???? the girl scouts are trying > > to plan a trip, > > > and we are > > > > hoping to plan around > > it............................... > > > > > > > > > > > > > > > > ************************************** See > > what's free at > > > http://www.aol.com. > > > > > > > > > > > > > > > __________________________________________________________ > Choose the right car based on your needs. Check out Autos new Car Finder tool. > http://autos./carfinder/ > > > > > > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Hi Helen, We went to Minneapolis in 2002, and I realized looking at the date on my boarding pass as we were getting settled on the plane that it was a year to the date after Robbie was first diagnosed. Wow, that makes it six years this summer since Robbie was diagnosed. My how time flies....  Robbie is doing quite well - he has been having some pain (mostly knee and elbo) and stiffness following some game days - and the fact that he has been playing on two teams has been a lot - now that the "regular" season is over the tournament team coach has increased the practices for the tournament team, so we are still running around like crazy. He had a scrimmage game Wednesday night that we rushed to when I picked him up from daycare - he had a quick snack in the car the game wasn't over until 9:00. We stopped for fast food on the way home for a ridiculously late dinner and got to bed at 10:00! With these hours, I'll never finish packing! We are away for a tournament this weekend, leave today after work, play a game tomorrow at 10 and another at 2, then one on Sunday at 8 am, and if we win that one will play another game Sunday before heading back home. He has another tournament the weekend of the 30th, we move the following weekend (7th) and then the next weekend is the Cal Ripken State Tournament. After that we have a break until the last tournament in Mid August. I found a house - close to some of Robbie's friends and it keeps us in the school district, so he is quite happy. I will be glad when the move is over and I can stop fretting about deposits, etc. I get the keys to the new house on the 29th or 30th, so I am hoping to get a lot of things moved before we move the furniture and big items. I guess I have rambled on enough for now - How is Nick feeling? He has had a rough week or two! I hope he is feeling better! Val Re: AJAO 2008 > > > > > > > > I have been told that it will be in San Diego. > > > > > > > > > > > On Jun 21, 2007, at 2:07 PM, Salvucci wrote: > > > > > > > Lets just say if its in Orange County.. I will for > sure be at that AJAO!! > > > --- hburger64 ..> wrote: > > > -UGHHH, > > > > I just checked and its 2000 miles from MN, Thats too > > long of a drive > > and I HATE to fly ((( > > > > I hope its wrong....and its way expensive out there. > > > > hugs Helen and (9,systemic) > > > > > > > > -- In , "hburger64" > > wrote: > > > > > > -Another LONG drive from MN, but at least its in > > the opposite > > > direction. > > > > > > Im hearing on another list, Orange County. So. > > Cal. > > > > > > I guess we will see if its true in a couple of > > weeks > > > > > > hugs Helen and (9,systemic) > > > > > > -- In , ajaomom@ wrote: > > > > > > > > where and when???? the girl scouts are trying > > to plan a trip, > > > and we are > > > > hoping to plan around > > it............................... > > > > > > > > > > > > > > > > ************************************** See > > what's free at > > > http://www.aol.com. > > > > > > > > > > > > > > > __________________________________________________________ > Choose the right car based on your needs. Check out Autos new Car Finder tool. > http://autos./carfinder/ > > > > > > > > > > > > > > __________________________________________________________ __ > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 burg was regional but Minneapolis was national. Liz From: [mailto: ] On Behalf Of carneyval@... Sent: Friday, June 22, 2007 9:47 AM Subject: Re: AJAO 2008 I thought the one in Minneapolis (2002) and the one in burg (2003) were both Nationals - but they may have been regional - I don't know. Val Rob's Mom (9,systemic) Re: AJAO 2008 -Beth, Im with you. Chicago would be awesome!! but the conferences are put on by the local chapters so the conferences are always going be in areas where they have large and active chapters. In the past they put on regional conferneces back in the late 1990's and early 2000's. I think 2004 was the 1st national one and now they just do one national one a year. 2004 San Deigo 2005 Rhode Island 2006 Atlanta 2007 Hershey 2008 unsure but sounds like West coast. I would be nice if they let everyone know where the are going to be a few years in advance, so people can decide which to go to, if attending each year is not possible. Im with you... we need a mid- west one!!! hugs Helen and (9,systemic) -- In , Beth Yohnk .> wrote: > > Val: > I would love it to be in the mid-west!!!! Of course I'm a Wisconsinite so I might be biased. LOL. Of course if it is San Diego I will start saving now. Way to far to drive for us. > > As soon as dates are announced would someone let me know. I can ask off for dates 11 months in advance. > > Sending prayers happy thoughts, > Beth :-) > > > > Re: AJAO 2008 > > > I have been told that it will be in San Diego. > > > > > > > On Jun 21, 2007, at 2:07 PM, Salvucci wrote: > > > Lets just say if its in Orange County.. I will for > sure be at that AJAO!! > > > --- hburger64 hburger64@...> wrote: > > > -UGHHH, > > > > I just checked and its 2000 miles from MN, Thats too > > long of a drive > > and I HATE to fly ((( > > > > I hope its wrong....and its way expensive out there. > > > > hugs Helen and (9,systemic) > > > > > > > > -- In , " hburger64 " > > ..> wrote: > > > > > > -Another LONG drive from MN, but at least its in > > the opposite > > > direction. > > > > > > Im hearing on another list, Orange County. So. > > Cal. > > > > > > I guess we will see if its true in a couple of > > weeks > > > > > > hugs Helen and (9,systemic) > > > > > > -- In , ajaomom@ wrote: > > > > > > > > where and when???? the girl scouts are trying > > to plan a trip, > > > and we are > > > > hoping to plan around > > it............................... > > > > > > > > > > > > > > > > ************************************** See > > what's free at > > > http://www.aol.com. > > > > > > > > > > > > > > > __________________________________________________________ > Choose the right car based on your needs. Check out Autos new Car Finder tool. > http://autos./carfinder/ > > > > > > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Beth, It would be nice to go back to the midwest - I enjoy travelling just about anywhere. Val Re: AJAO 2008 Val: I would love it to be in the mid-west!!!! Of course I'm a Wisconsinite so I might be biased. LOL. Of course if it is San Diego I will start saving now. Way to far to drive for us.  As soon as dates are announced would someone let me know. I can ask off for dates 11 months in advance.  Sending prayers happy thoughts, Beth :-) Re: AJAO 2008 I have been told that it will be in San Diego. On Jun 21, 2007, at 2:07 PM, Salvucci wrote: Lets just say if its in Orange County.. I will forsure be at that AJAO!!--- hburger64 hburger64hotmail> wrote:> -UGHHH, > > I just checked and its 2000 miles from MN, Thats too> long of a drive > and I HATE to fly (((> > I hope its wrong....and its way expensive out there.> > hugs Helen and (9,systemic)> > > > -- In , "hburger64"> ..> wrote:> >> > -Another LONG drive from MN, but at least its in> the opposite > > direction. > > > > Im hearing on another list, Orange County. So.> Cal. > > > > I guess we will see if its true in a couple of> weeks> > > > hugs Helen and (9,systemic)> > > > -- In , ajaomom@ wrote:> > >> > > where and when???? the girl scouts are trying> to plan a trip, > > and we are > > > hoping to plan around > it...............................> > > > > > > > > > > > ************************************** See> what's free at > > http://www.aol.com.> > >> >> > > __________________________________________________________Choose the right car based on your needs. Check out Autos new Car Finder tool.http://autos./carfinder/ AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 The Arthritis Foundation changed from an annual National conference to a Regional format, with every other year being National just after the Minnesota AJAO. They typically went from east coast, to central US, to west coast in a rotation. Now it's up to whichever chapter is willing to foot a the hefty bill, and time of putting these things on. Now the AF has eliminated AJAO and they call this a JA conference. Many changes are occurring, it's best to watch, and wait to see what's next. I do, however, believe we should all press the higher ups, to choose less expensive hotels, lower registration rates, and access to the conference hotels, by nearby airports, trains, bus routes. This is a family event, and for younger adults with Arthritis… it's too expensive for MANY to attend. A non-profit organization should be more mindful of total expense costs. What do you think? Fischer DPA Architects, Inc. pfischer@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Pete, Change is occurring and we do need to keep our eyes and ears open while also keeping open minds. Change is definitely needed if the organization is to better meet the needs of people with arthritis. A note about AJAO~~ The Arthritis Foundation did not eliminate AJAO. At the AJAO Council meeting in Atlanta last summer it was decided that AJAO should become a fully integrated part of the Arthritis Foundation, especially since the AF leadership has placed JA among the top 3 priorities of the Foundation. The Council Board unanimously approved the transition and name change from AJAO to JA Alliance. As far as conference costs go, the registration fee covers only a VERY small portion of what it costs for anyone to attend. The slight increase in registration cost this year was the first increase in several years. Hotels are chosen by conference space and room availability, as well as cost. The AF is aware that many cannot attend and is looking at ways to address that issue. And cost is not just associated with AF conferences. Because has more than one autoimmune disease I get info on other organizations and their conferences as well. They, too, are expensive and, in fact, often cost more than the JA conference. Liz From: [mailto: ] On Behalf Of Fischer Sent: Friday, June 22, 2007 3:03 PM Subject: Re: AJAO 2008 The Arthritis Foundation changed from an annual National conference to a Regional format, with every other year being National just after the Minnesota AJAO. They typically went from east coast, to central US, to west coast in a rotation. Now it's up to whichever chapter is willing to foot a the hefty bill, and time of putting these things on. Now the AF has eliminated AJAO and they call this a JA conference. Many changes are occurring, it's best to watch, and wait to see what's next. I do, however, believe we should all press the higher ups, to choose less expensive hotels, lower registration rates, and access to the conference hotels, by nearby airports, trains, bus routes. This is a family event, and for younger adults with Arthritis… it's too expensive for MANY to attend. A non-profit organization should be more mindful of total expense costs. What do you think? Fischer DPA Architects, Inc. pfischerdpaarchitects Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 , I agree. I know they are tyring to keep costs down but when we pay out at least $300 a month for medicine and her Remicade bill is $3,000-5,000 an infusion that our insurance does not cover, we have not been able to make it to a conference yet. I don't need the fanciest hotel. I have never paid the kind of money these hotels are. If it is in Disney area at least I know there are some low cost hotels around there. But you still need a rental car which is expensive. When you have a child with a chronic health issue like this with very expensive medical care going somewhere for a conference is not very easy. Even if it is just my daughter and I who attend that will be $500 or more for airfare, then hotel, conference fees and food. That is a huge amount of money, and that is with it on the West Coast. I would like her to be able to go once though to talk with other young adults about young adult issues with JRA. To me, it just seems that companies that are making big profits off of arthritis medications could donate more to make these types of things feasible for more. e Fischer <pfischer@...> wrote: The Arthritis Foundation changed from an annual National conference to a Regional format, with every other year being National just after the Minnesota AJAO. They typically went from east coast, to central US, to west coast in a rotation. Now it's up to whichever chapter is willing to foot a the hefty bill, and time of putting these things on. Now the AF has eliminated AJAO and they call this a JA conference. Many changes are occurring, it's best to watch, and wait to see what's next. I do, however, believe we should all press the higher ups, to choose less expensive hotels, lower registration rates, and access to the conference hotels, by nearby airports, trains, bus routes. This is a family event, and for younger adults with Arthritis… it's too expensive for MANY to attend. A non-profit organization should be more mindful of total expense costs. What do you think? Fischer DPA Architects, Inc. pfischerdpaarchitects Don't be flakey. Get for Mobile and always stay connected to friends. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Well Pete you know I must throw my 2 cents in for whatever it means. This has been an issue for many (most) of the families and YA's I know. The conferences always seem to be in expensive facilities, with expensive registrations and this forces many people to not be able to attend, myself included. It makes me quite angry. I know there are many factors that must be considered but I also know there are less expensive hotels that could in fact hold conferences in various markets. Why this is not a factor is so discouraging and upsetting. I have been told that if I want to attend I should save my money through the year. What money? My family lives paycheck to paycheck with no funds leftover whatsoever. Many weeks we "rob to pay " . Do we get groceries or pay an electric bill? Know what I mean??? So conferences are not on an agenda for us despite how much they mean to me and my family. By choice I volunteer many hours for the AF and it seems to me asking for financial help to attend a conference to not only help me but also the families I serve would not be a huge deal...because I have been before and received a scholarship I do not qualify for further help. I know many, many families who would benefit from a conference but simply cannot....what do we do?????? DonnaSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 I too would love to see it in the Mid-West. has a hard time traveling. Just our trips to see the Rheumy in St Louis can wipe him out. We have to make it a two-day trip. We might be able to go further if it were a several day trip. Misty & (8, systemic) > > Val: > I would love it to be in the mid-west!!!! Of course I'm a Wisconsinite so I might be biased. LOL. Of course if it is San Diego I will start saving now. Way to far to drive for us. > > As soon as dates are announced would someone let me know. I can ask off for dates 11 months in advance. > > Sending prayers & happy thoughts, > Beth :-) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 I wholeheartedly agree that first timers should by all means receive any scholarships available and often encourage families from my area to apply in hopes they too will get to go. This year we had a family who is so, so deserving and have not ever been, were in need financially, met all criteria but unfortunately were unable to go due to lack of funds from the themselves and the AF. Only one family from KY gets chosen and to me that is so sad.....When I ran FACES, separate from the AF, we had funds donated specifically for the AJAO. We were ecstatic when we sent 22 people (9 families) to Minnesota and paid for travel, hotel and conference fees. If we as a small support group could do this I feel the AF could send more. It would mean more work, more volunteers, more fundraising and none of this easy. I feel as someone else mentioned why can't pharmaceutical companies get involved in a scholarship or possible some other philanthropic groups? I know so many who have not gone, deserve to go, but do not stand the chance. It makes me sad. I know how much my first AJAO meant to me and how much it helped me and to this day has made such a positive impact on my life. I only wish it was there for me as a child...Now it is there yet so many will never know these benefits....of course being the sap I am I also wish I could send everyone but cant even send myself and I know the AF cannot send many I just feel there has to be a way to develope and implement a scholarship program..... whether at national or local levels...I actually may look into this for my area, geez see what I started. I just cant stop when it comes to this but again I believe it is so wonderful and so, so important........ gotta run...thanks for the feedback Liz DonnaSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Donna, My husband has planned many conferences thru the years, held in different parts of the country, so I asked him about this. His answer is that there really aren’t that many facilities that have the conference space to accommodate groups the size of ours, especially when you look at the number of conference rooms needed to keep the kids’ groups reasonably sized and appropriately divided, and for all of the parent and young adult sessions. And the majority of facilities that can accommodate groups our size are not inexpensive. Still, the AF works VERY hard to negotiate the best possible room rate for all of us, understanding that cost is a huge factor for most families. As for scholarships, I hope that someday the AF has the kind of financial strength~~ which means a lot more fundraising!!~~ to send a lot more families and young adults to the conference. I would love to see every family and young adult get sent to at least one conference. But we’re not there yet. So, honestly, it makes sense to send a person or family just one time. I remember when our chapter sent the same person two years in a row and, according to him, to all 3 regional conferences. Now this person meant a great deal to my family, especially to , but it still bothered me that when so many needed the conference and couldn’t afford it, the same person got sent repeatedly. I believe that you can still help the families you serve and do a great job without going to the conference every year. (Side note~~ you WILL be missed!) You have the passion and the dedication, Donna, and you can help kids and their parents because of that. Liz From: [mailto: ] On Behalf Of ajaoky@... Sent: Friday, June 22, 2007 8:22 PM Subject: Re: Re: AJAO 2008 Well Pete you know I must throw my 2 cents in for whatever it means. This has been an issue for many (most) of the families and YA's I know. The conferences always seem to be in expensive facilities, with expensive registrations and this forces many people to not be able to attend, myself included. It makes me quite angry. I know there are many factors that must be considered but I also know there are less expensive hotels that could in fact hold conferences in various markets. Why this is not a factor is so discouraging and upsetting. I have been told that if I want to attend I should save my money through the year. What money? My family lives paycheck to paycheck with no funds leftover whatsoever. Many weeks we " rob to pay " . Do we get groceries or pay an electric bill? Know what I mean??? So conferences are not on an agenda for us despite how much they mean to me and my family. By choice I volunteer many hours for the AF and it seems to me asking for financial help to attend a conference to not only help me but also the families I serve would not be a huge deal...because I have been before and received a scholarship I do not qualify for further help. I know many, many families who would benefit from a conference but simply cannot....what do we do?????? Donna See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Donna,I do hear you. We have never been. One year when it was regional the Arizona one, they offered us a partial scholarship but I could not come up with the rest of the money. My daughter -joe to all of you- is now in college and would love to go to talk to some of the older YAs about life issues and how to cope. We can not come up with the money to go. My husbands family is having a family reunion in Missouri and we can't afford to go there when all we need to do is get there. We are so strapped with the medicines, doctors, etc that we just can't do this. I am going to look into this one. It may be doable if we really work at it, but it will only be her and I that would go I am sure. Each year I say I am going but we haven't been able to. We bought her some orthotics a couple months ago, that is another $300 we have to pick up. Enbrel, Remicade, Humira, Kineret etc are making big big bucks, yes there were research costs involved but these companies now have huge profits and their CEOs and others are well provided for. Why can't they fund some children/adults to go to a conference? There has to be a way to make this affordable for more and allow many more to go. Not everyone had the money to do this. We are like you, living paycheck to paycheck to pay for the basics these days. On Remicade day, I travel 700 miles or more, so there is gas, food, parking, etc on top of the medicine/hospital fees. It is a great burden for us sadly. Keep fighting Donna. You are amazing.e, mom to joe 20 polyajaoky@... wrote: I wholeheartedly agree that first timers should by all means receive any scholarships available and often encourage families from my area to apply in hopes they too will get to go. This year we had a family who is so, so deserving and have not ever been, were in need financially, met all criteria but unfortunately were unable to go due to lack of funds from the themselves and the AF. Only one family from KY gets chosen and to me that is so sad.....When I ran FACES, separate from the AF, we had funds donated specifically for the AJAO. We were ecstatic when we sent 22 people (9 families) to Minnesota and paid for travel, hotel and conference fees. If we as a small support group could do this I feel the AF could send more. It would mean more work, more volunteers, more fundraising and none of this easy. I feel as someone else mentioned why can't pharmaceutical companies get involved in a scholarship or possible some other philanthropic groups? I know so many who have not gone, deserve to go, but do not stand the chance. It makes me sad. I know how much my first AJAO meant to me and how much it helped me and to this day has made such a positive impact on my life. I only wish it was there for me as a child...Now it is there yet so many will never know these benefits....of course being the sap I am I also wish I could send everyone but cant even send myself and I know the AF cannot send many I just feel there has to be a way to develope and implement a scholarship program..... whether at national or local levels...I actually may look into this for my area, geez see what I started. I just cant stop when it comes to this but again I believe it is so wonderful and so, so important........ gotta run...thanks for the feedback Liz DonnaSee what's free at AOL.com. Don't be flakey. Get for Mobile and always stay connected to friends. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2007 Report Share Posted June 25, 2007 To all who are going to Hershey have a wonderful time. First timers, don't be shy...ask questions, meet as many people as possible. Use the roster and make sure get phone numbers and emails of those you meet, and above all have a safe trip and wonderful time. Take pics and post when you can! DonnaSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.