Had an intriguing telephone call today..SS Research

[SjoDry]

Hi Sjoggie-Mates.

A few years ago I attended a SS Patient Conference and met a research doc who is local to my area & doing gene research on SS. He called me today to ask if he could come speak to my group about
his research & findings. Apparently, he has made huge strides & is working with a drug company on a treatment for SS & expects to start trials in 2018. I don't know a lot more than that at this point.

I will pass on any information that I get. I think I will wait to have him speak until spring when I can count on the weather not messing up the meeting attendance. Plus, I may invite our nearby Cleveland support group members to join us.

So there it is Bucky...SjoDry's good news contribution for today :-D

Have a great weekend everyone!
SjoDry

[Jasper]

This sounds very interesting and exciting.

Any chance he would speak at the next national Sjogren's conference in April 2017?

I would love to hear about his research, ideas, and trial plans.

[SjoDry]

Jasper,

I don't know. The SSF has given him scholarships in the past for his research..so they are aware of his work. I suppose if he is able to bring a treatment to the market, they might have him speak. I am excited to hear his information anyway. He told me that he would really like to get some patient advocates behind his efforts. Not quite sure what he meant by that. I will be his biggest cheerleader as long as he doesn't need a financial donation 

SjoDry

*** Just had an email exchange with the research doc. He had mentioned that they needed to develop a device & I asked him about it. Here is his response:

"The device we are developing is an ultrasound transducer that we hope will be capable of delivering genetic medicine to the salivary gland.  These gene drugs will allow disruption of the disease process and/or restarting the flow of saliva.  We see this as a treatment that would be required roughly every 6 months, but clinical trials will be needed to understand how frequent treatments are needed."

[warmwaters]

Potentially very exciting. What's the doctors name?  I'd like read whatever he's published.

[Lindabridge]

This is very exciting news. Where will the Sjogren's conference be held?

[SjoDry]

WW: I have his email at work..so I am guessing at the spelling of his last name from my poor memory. His name is Dr. Michael J. Passineau

Lindabridge, the SSF Patient conference will be held in Philadelphia this year.

SjoDry

[JoanElizabeth]

A little off topic but I live in Philadelphia. Do you know when more information will be availble about the conference? Is there a way I could get involved in the planning/foundation?

[Jasper]

Joan Elizabeth ..... You can contact the Sjogren's Syndrome Foundation and ask how you can get involved. I am sure they welcome volunteers.

Here is a link to their website:

http://www.sjogrens.org/

[Lindabridge]

Judging from the information on the 2016 conference, it looks like it will be held in April. I will be attending. I hope to meet some of you in person.
🙂