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01/04/2012 11:37 AM

Any Members of Sjogren 's syndrome Foundation?

1winston
 
Posts: 29
Member

It was brought to my attention that the Sjogren 's syndrome Foundation has approximately 3-4 support groups/ meetings per year. While there is no fee to attend the group/ meeting, I was advised it's beneficial to become a member to receive additional benefits and mailings. I was just wondering if any of the SSF members have found the ‘additional benefits and mailings' valuable.

For all the New Englander's that read this post, the next meeting in my area (Boston) is on Feb 4th, a couple of doctors/ researchers will be discussing new therapeutic approaches and challenges for the treatment of dry eye disease. I was told there's approximately 150 sjogren sufferer's that attend (plus family/ friends). It should be interesting...

Post edited by: 1winston, at: 01/04/2012 11:39 AM

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01/04/2012 09:12 PM
Dreamers
DreamersPosts: 198
Member

I called to sign up for those meetings but the lady had to cancel them due to no one or few people attending. I say if we can have a least 2 people we should meet.

01/05/2012 07:47 AM
1winston
 
Posts: 29
Member

That's really odd,I wonder who you spoke with: Below is an email from the doctor in charge of the support groups for the Boston area. Hope this helps-

Jan 3 (1 day ago)

Dear Arlene,

Thank you for contacting me and welcome to the Greater Boston Sjogren's Support Group. We currently have over 150 active members in the group, who live in Massachusetts, Rhode Island, New Hampshire Maine and a few in Connecticut. Each year we have 3 or 4 meetings, which we have been holding at the Tufts Medical Center in Boston, on designated Saturday mornings from 10am -12noon. At our meetings, we either have a presentation by a professional on a topic concerning Sjogren's or we have facilitated small group sessions. Spouses/friends/family are always encouraged to attend and there is time for people to network and to discuss their concerns.

Our next meeting will take place on Saturday, February 4th and Dr. David Sullivan, Senior Scientist & Margaret S. Sinon Scholar in Ocular Surface Research at the Schepens Eye Institute will be giving a talk entitled “New Therapeutic Approaches and Challenges for the Treatment of Dry Eye Disease”. I hope you will be able to attend.

Our meeting notices are sent out to area members by the Sjogren 's Syndrome Foundation. If you are not a member of the Foundation I strongly recommend that you join. I also post meeting announcements on the Sjogren's List Serve. If you are not familiar with the List Serve, please let me know and I will e-mail you the information.

Looking forward to hearing back from you.

Best regards,

Lynn

Lynn C. Epstein, MD

Leader of Greater Boston Sjögren's Syndrome Support Group

Clinical Professor Psychiatry, Tufts University School of Medicine

Direct: 857- 919- 1598

E-mail: Lynn.Epstein@tufts.edu


01/05/2012 07:48 AM
1winston
 
Posts: 29
Member

Dreamers do you live the boston area?

01/05/2012 11:03 AM
gemini2
gemini2  
Posts: 423
Member

1Winston, I got the same response from the person in charge of the meetings in my area - Fort Lauderdale (South Fla.)She told me the last meeting was cancelled because there just weren't enough people who felt well enough to attend anymore. I agree with you Dreamers, if there are 2 people who'll attend, that's enough for me. Smile I just sent the memebership fees in to join the SS foundation. Still, local meetings would be really good, I would really appreciate if they would start up here again. Take care...

01/05/2012 06:33 PM
1winston
 
Posts: 29
Member

Hi gemini2, I'm not familiar with the meet up groups in other regions of the country. Although if I were you I would check local hospitals, sometimes they have informal support groups for patients. Another option is try www.meetup.com to see if there's a support group for autoimmune diseases in your area. I agree 2 or more people should be sufficient to be defined as a group. As a last resort you can always start a support group via meetup.com or seek assistance from SSF in establishing a group.

Good luck with finding or establishing a support group!


01/10/2012 08:10 AM
gemini2
gemini2  
Posts: 423
Member

Thanks, I'll check it out. I'd like to start a meeting...now that I've joined the SS Foundation, perhaps they'll give me info on how to start one? Smile

01/10/2012 07:23 PM
afgreyparrot
Posts: 5
Member

I am a member of the Sjogren's Syndrome Foundation...my rheumy advised me to join. They do have a good informative newsletter every month.

01/12/2012 10:10 AM
1winston
 
Posts: 29
Member

thanks for the feed back. Smile

01/16/2012 02:28 PM
geewisp
 
Posts: 1
New Member

Are the any meetings in the uk? Does anyone have a contact who I could go through. I think i would really like to meet people who i could speak regarding ss. Since I was diagnosed with ss, my only contacts have been located in the usa through the internet.
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