Are any of you going to the Sjogrens Patient Conference in April?
What is it?
I did not know there was one. Answering your question, it depends on how close it is to me. Where is it being held? Thanks for the heads up.
Sjogren's Patient Conference in Bethesda, MD. April 12-13
http://www.sjogrens.org/home/get-connected/patient-seminars
Looks like it will be a good one, I've decided to go.
SjoDry
Yes! We love these conferences and find them so helpful. The best thing is being with others who UNDERSTAND what you are going through. If you see us, please come up and introduce yourself. We are easy to spot....at least while standing, as my husband is 6'8". I hope a lot of you are able to come.
One of my hearing loss support groups used to set up a meet-up at National conferences. Maybe you could do that here. Ask the conference organizers if there is some way you could do that.
Sharon
If I were to attend the conference, I would have to admit that my sero-negative self really does have Sjogren's! :o ;D 8)
I live in Ohio and am planning to attend with my husband. I was just diagnosed with Sjogren's in August of 2012, so I am looking forward to attending this conference and learning a lot more about this auto immune disease. I was just filling out the registration form before I got online here, as I was wanting others information about Prednisone. I just starting taking it a few days ago, and I think it's going to help (along with Plaquenil, Salagen, Celexa, etc.!)
Won't be able to go, but recommend it as very useful. I attended the one a few years ago that was held near San Francisco.
I would like to go for one day. I just do not think I could do two.
I don't see an option for one day only...am I missing something? Not looking in the right place?
I would hate to register and not have the energy to go...that is just the way it has been lately.
DH keeps asking me if I have registered.
I told him he could drive his motorcycle down and go for me... ;D
He is considering it... ;)
Do people who attend receive printed information/lecture, can it be posted or is it copyrighted?
Don't know if they allow it to be posted, doubt it since the Sjogren's Foundation sells all of the information from the conference in their store.
SjoDry
Just called their 800#
So you have to commit for the 2 days. If you stay at the Hyatt and say you are going to the SJS conference they will charge $129/night.
Not sure what other hotels in the area charge. If you have AAA or ARP ? other discounts.
I live so close to Bethesda, it would be crazy if I don't go. I'll be there for both days.
I would love to take my daughter. It might actually help her understand. But Maryland is a little too far for us. I do hope that others will attend tho. I hear they are very helpful!
Quote from: quietdynamics on February 20, 2013, 09:56:58 AM
Just called their 800#
So you have to commit for the 2 days. If you stay at the Hyatt and say you are going to the SJS conference they will charge $129/night.
Not sure what other hotels in the area charge. If you have AAA or ARP ? other discounts.
That is a good rate for Bethesda. Hotels in Washington, DC itself would be much more, so it's nice that the conference is being held in a less expensive area.
I just checked the rates on they Hyatt website: 129 seems to be their regular rate anyway?
With AAA $116- 122 /night
http://bethesda.hyatt.com/hyatt/reservations/flow6/propSelectedHotelRates.jsp?xactionid=13d188d0a2a&_requestid=349962
Having been recently diagnosed with Sjogrens, I've decided to attend the conference. I'm looking forward to learning about the latest treatments and especially looking forward to being with people who 'get it'! Hope I get to meet some of you!
Super, so glad you are coming. I too, will be in attendance.
You can recognize me by my: Pale, wrinkly skin, red eyes and the ribbon on my nametag.
Looks like it will be a great conference.
SjoDry (aka Sandy)
I'll look for you SjoDry for sure! What color ribbon? I'm 5'8 - dark hair - medium build. I'll be the one coughing, putting drops in my eyes, and sucking on a lemon candy. Lol - so will everyone else, I guess! Really hope to see you, Sandy :D
NJTeacher aka Donna
Not sure of the ribbon color (maybe they do blue for the Sjogrens Foundation).
Here's another clue...a lovely fever blister left over from my latest respiratory/sinus/cold combo.
Look for the lady with a chapped mouth & under nose area..that can best be described as "clown mouth". :-[
P.S. I actually had a Tshirt made (which I will be wearing) which says: SjoDry and Parched...you won't be able to miss me LOL.
SjoDry
SjoDry, I'll make sure to check out all tee shirt wearers and find you😀 I hope your sores heal by then. Anyway, it doesn't matter!!
Yes and looking forward to it,
.
Hello all! I was just curious if you think this conference would benefit my daughter at all? Since she is only 10, I wasn't sure if it would help her or not. Have any of you ever attended before? It would be wonderful of there were other kids there. Hopefully, I can attempt to get there. Thanks for input!
Crys
Contact the conference organizers and ask. If they don't have a reception or other get-together for people with Sjogren's, they should. If nothing else, you could congregate and order a pizza!
Even if your daughter wouldn't benefit, and I doubt that she would unless there are other kids there, you will learn a lot. Connecting with some teens/20-somethings would be great, and maybe she could get a "big sister" or "big brother" to help her.
I wish I could go!
Sharon
All of you that attend, we hope to hear about it...:)
I would be interested in what dr birbaum has to say about the neurological aspects in SJ..
Second, other possible causes of dry eyes/dry mouth combo, besides SJ if its discussed...which may give some of us more insight into our presentation, if we are seronegative...