Hi Sjoggie-Mates,
I am preparing for my upcoming Sjogren's Support Group Meeting that I facilitate (Sjoggies In Pittsburgh). Our speaker will be a local doctor who is the head of gene therapy at Allegheny General Health system. This doctor sought me out & asked to speak to our group. He wanted to give our group an update on his research and the new treatment they have developed for dry mouth.
As I was collecting my information about the doctor to have at our meeting, I came across a YouTube video that was created in 2012. Now the video does not say Sjogren's Syndrome in it, but the treatment will absolutely be one for Sjogren's patients and those with severe dry mouth. Anyway, I thought some of you might be interested in the video from 2012 explaining the mode of treatment.
Hopefully, I can bring back any updated info after our meeting on the 27th.
Here is the link for those who might be interested in hearing about the actual research intent.
https://www.youtube.com/watch?v=QI3b6G-3DKE
Take Care.
May the moisture be with you!
SjoDry
Hi SjoDry,
Very interesting! Thank you for posting this.
So did you learn anything new at the meeting?
Take care,
Maria
This is very exciting. Thank you for posting information and video.
I really do not not understand why dental is covered by insurance for chemo patients, but, not Sjogrens patients who have gland dysfunction. *National Institute of Dental and Craniofacial Research was discussed in video.
http://www.medicareadvocacy.org/old-site/Projects/AdvocatesAlliance/IssueBriefs/09_02.09.DentalSvcs.pdf
So intriguing SJoDry....I wonder what stage of development it's at?
quietdynamics- Excellent question!
Dr. Passineau spoke to our group on May 27th.
Aside from being an amazing speaker, he had a wonderful ability to present anatomy and physiology of our glands very simply with various analogies, and how the medication would be distributed into the glands. I will need to clarify the medication name, since I am not recalling it at this moment.
He is 1-2 years from clinical trials. I asked him if he would create a video of his presentation because I would like to share it with my FB Sjogren's page and anyone here who might be interested. He talked about the need for funding at a federal level. He was going to check into the video idea.
SjoDry