Hartford Connecticutt Patient Seminar Oct. 2

[Navigator]

I signed up for this patient seminar sponsored by the Sjogrens foundation.  Anyone else going?  I will take good notes and report back as I found the notes from the San Fran seminar interesting.  Its at the Sheraton at the Bradley International Airport, Windsor Locks, CT. About 2.5 hours from NYC I would say...and 2.5 hrs from Boston.

[DragonflyC]

I'm going, too!

[LizPetillo]

I really wanted to go.  I grew up in Suffield which borders the airport where the seminar is being held.   So did my husband.  We were going to make a weekend out of it.  But the trip from Delaware is too much for me right now.  It would wipe me out.

[shevonne]

I want to go as well! I thought I signed up but thought it was on the 12th; then I couldn't find it again.  What time is it?  I only live about ten minutes from there.  I'm in Middletown!

[DragonflyC]

You will be missed, Liz!  It would have been great to see you.

Shevonne, information about the seminar can be found here: http://www.sjogrens.org/home/about-the-foundation/news-and-events/226?task=view

You can call 800-475-6473 to see if you are registered and to reserve a spot if you aren't.  I hope you get to attend!

--Cari

[shevonne]

Thank you!  They just told me it will cost 90 bucks to register to the Sjogren's Foundation.  Did you pay this much and what do you get for your money?

[shortstuff]

I really wanted to go as well and am not far (NJ).  Would love to hear about it.  I'd really like to know expert opinions on the research coming out of Dr. Denise Faustman's lab at Mass General - if they think her work will eventually lead to a cure for us, or at least for our salivary glands.  If so, wish we could somehow partner with her even though the crux of her research is type 1 diabetes......she may be close to finding answers for several other AI diseases too.....if she can get the funding!  Oh, and a little extra nudge form the SjS community.

[DragonflyC]

Shevonne, I did have to pay $90, which I also thought was a pretty high price. 

It does include a year long membership to the Sjogren's Syndrome Foundation in addition to the seminar.  I like that idea, but it's still a chunk of change.  In the end, I just decided to look at is as a donation to a good cause more than as a payment for a day seminar.  I want to support the foundation, and I appreciate that they put this event together for a disease that so many people dismiss.

Shortstuff, I'll do my best to share what I learn, though I can't promise notes like Magistramarla's because I don't want to bring my laptop and my arthritis acts up when I use a pen.  I may break down and bring the computer anyway, in which case I will post full reports. I agree that Dr. Faustman's research looks promising.  I don't see it listed specifically in the brochure, but I hope she gets mentioned. 

[LizPetillo]

Ya'll ... if you do get there and get extra time .. go visit Old Newgate Prison.  It is from the Revolutionary War time and is on the mountain near the airport.  The leaves will be in full color now and the view from there is magnificant.  PLUS - you get a taste of Old New England from the Revolutionary War time period.

man ... i'm jealous ... I wish I could go. 
I spent the first 20 years of my life there ....

[lindaneall]

Navigator, I would SO much appreciate it if you could share what you learn. I had made reservations for the hotel and was getting ready to register for the seminar when my health crashed. I was very disappointed because I LOVE going to these conferences.  I was especially interested in the topic about how this disease affects those we love.  I hope you are having a wonderful time there this weekend.

[newhorizons]

In a few months after events, it has been in the past you can order CD of the specific topics that are being discussed today at Hartford Seminar or you can order whole series for X number bucks.**

From The Moisture Seeker here are topic titles and speakers for today's Hartford Patient Seminar: *

Overview of Sjogren's Syndrome - Ann Parke, M

Treatment of Dry Eyes in Sjogren's - Peter C. Donshik, MD

Research Update - Steven Taylor, SSF Chief Executive Officer

The Sjogren's Ripple Effect - Susan Milstrey Wells
      lindaneall (This is topic about relationships w/family,friends& others in your life)

Measuring the Activity of Sjogren's Syndrome - Steven E. Carson, MD

*Included in Sept issue of The Moisture Seekers. is a short bio of speaker and overview of what each topic concerns.
**The Moisture Seekers is a monthly publication of the Ntl Sjogren's Foundation. Visit www.sjogrens.org and you can learn more about the SS Foundation. Membership is $32 for a year and inlcudes the monthly publication received in the mail.

[shevonne]

@Dragonfly, did you enjoy the seminar?

[ErinG]

I can't believe I missed this thread!  I work in Enfield and I would've looked into attending.

LizPetillo,
I think the Old Newgate Prison is closed, they have closed a lot of state museum/historical sites over the last few years due to budget cuts.  It's really unfortunate because I haven't been there since I was very young and I'd like to go again.

[LizPetillo]

Erin .. could be closed.  Dunno.  It's been a few years since I've been there.
Grew up in Suffield! ... I spent a lot of time in Enfield. 

[DragonflyC]

Shevonne, I expected to enjoy it, but I was surprised by how much I did.   I'll post some notes in a few days.  Dr. Ann Parke's overview was especially compelling.  I had thought it would be information that I already knew, but she recontextualized the information in ways that were truly thought-provoking and eye-opening. 

The most interesting point, in my opinion, was that several people referenced Dr. Fautman's work, but no one mentioned her by name.  As much as I'd like for her to get credit, I view it with optimism: her work has been so accepted by the medical community that it can be presented side-by-side with older ideas and doesn't have to be presented as just "promising" or "ongoing research."  At least two speakers referenced the importance of spleen cells and the effectiveness of Rituximab.