I was just reading through some of the research grants on the SSF website. Is there any way to know the results on any of this, or how it's going so far? I know that the Faustman research has a website with updates, but how about some of the other grants? Does anyone here have any contacts that can give us any positive info?
I've been feeling really crappy lately and need a little hope. I still have my fingers crossed that Faustman will find a cure, but if an effective therapy can be found in the meantime, I'll be so happy. My mouth hurts, nothing helps my gastritis and reflux, and now I think I tore the cornea on my left eye. Sorry to complain so much. It's not a good day.
Oh, and let me also mention that today my brother told me that I sound like a hypochondriac and that I just need to believe that I'm healthy and I will be. (I wasn't even complaining to him - I know better, I just made a joke about my teeth). After my response, he probably won't be speaking to me for awhile.
Thanks in advance for any info!
Cathy
Cathy,
Your best bet would be to contract the Sjogren's Syndrome Foundation direct and ask them.
Sjogren's Syndrome Foundation Inc.
6707 Democracy Blvd., Ste 325
Bethesda, MD 20817
Phone: 1-800-475-6473
Pooh
Cathy,
I am so sorry you are feeling rotten lately!
Don't you wish you could put your brother in your skin for a couple months while you get things done?...and pin a note to his shirt that says "I'm a hypochondriac!"
I want to know the answer to your question also.
I went to the Sjogren's Foundation site and signed up to be in the study in San Francisco about a week ago....but no one has contacted me.
Janna
I'm sorry Kathy that your brother was so insensitive. Just tell him to walk a mile in your shoes then tell me how I should feel.
Steve
Thank you all for your responses. I won't have a chance to call the SSF this week probably, but when i do I'll let you all know what I find out.
My brother apologized. I agree with you guys, it would be nice if others could experience a day with Sjogren's. I wouldn't wish anymore than that on someone. I sent him the NY times article. I think that helped him understand (a little). I hope the biologics that Dr. Vivino mentioned in the article are safe, effective and approved quickly!
Thanks again! It's so nice to be surrounded by caring people who understand.
Cathy
Hello everyone! Here's a copy of my e-mail to the Sjogren's Syndrome Foundation and the response:
SSF:
I am a 41 year old female who was diagnosed with Sjogren's in May 2008. I suffer from dry mouth (this makes every day miserable), dry eyes, reflux, gastritis, fatigue, brain fog, joint pain, autonomic dysfunction and more. I visit your site frequently in the hope that you will update your "Research News" tab. I have the following questions:
1) You have many research grants listed. Can you update us as to the findings of those studies which have been completed?
2) If a study has since been picked up somewhere else for further study or a clinical trial, can that information be noted on the website?
3) For those research grants in which research is ongoing, can any information be provided? If not, could a research start date and/or expected end date be given?
4) Whenever a study concludes and shows potential future benefit, can you PLEASE put this information on the website?
5) Is the Faustman research ongoing? I've visited the Faustman site and can only find the Diabetes 1 clinical trial. Does this trial include Sjogren's patients as well? If not, is there any anticipation as to the time frame for the SSF Research Grant study by Dr. Faustman? Does the SSF have any knowledge as to whether the current clinical trial for the BCG vaccine for Diabetes type 1 would have to be repeated in it's entirety specifically for Sjogren's in order to be approved for SJS (assuming the vaccine is successful)? Or could an abbreviated trial be performed that would take fewer years?
I thank you for the progress you've made against Sjogren's. The hope of a cure and better therapies is the only thing that has kept me from a deeper depression. If you can provide any hopeful information on your site, it would help many of us so much. I've read the abstracts of so many of your research grants and would love to know what the results were. I post frequently on the Sjogren's World website and there are a lot of patients on that site hoping to find out the results of the research grants as well.
Thank you again for the wonderful work you're doing.
Cathy
Dear Cathy:
Thanks for your questions and your desire for more information.
The Sjögren's Syndrome Foundation is in the process of totally overhauling its website, and subsequently, we've often neglected current updates while we focus on the expanded services and information that our new website will offer. The new website will go live in 2009, but we don't know yet exactly when. In the meantime, please accept our apologies for our current neglect – especially in an area that is so important to you and to many of us. I am also a Sjögren's syndrome patient and care very deeply about our research program and ensuring that better treatments and answers are forthcoming.
The new website will post clinical trials in Sjögren's, so viewers will know about medications or products under investigation and in the pipeline. We also list trials periodically in our newsletter for professionals (but which is also available by subscription to patients), the Sjögren's Quarterly. In addition, we summarize the findings in the Quarterly of all SSF research grants upon their completion. I like your idea of also summarizing accomplishments of our grantees on the website – thank you for that suggestion.
Research is the only way we're going to find answers, and at the same time, it's inevitably a lengthy process. Often, a 2-year grant from the Foundation supplies the seed money that takes a novel idea to the stage at which enough information is gathered to enable an investigator to receive a much larger federal grant and one for an extended period. Many of our grantees become professors and lab directors at university medical centers, meaning that they mentor the researchers and clinicians of tomorrow. A majority of recipients continue a focus on Sjögren's through their career. So, while we definitely want answers in the short-term, we also want to nurture the teachers and investigators of tomorrow.
Dr. Faustman is doing basic scientific research in Sjogren's right now – where it all has to begin; it's much too early to try her ideas in patients, although that's our hope for the future. The diabetes trials will indeed pave the way so that I should think that trials could be shortened in Sjögren's patients, since safety factors and FDA approvals and processes will have been worked out and could be adapted for Sjögren's patients. We first funded her protégé, Shohta Kodama (who is now an Assistant Professor at Harvard and continuing his Sjögren's research), in this research area and under her supervision in 2004, and then Dr. Faustman applied for a subsequent grant, which was awarded on July 1, 2007, and will run until July 1, 2009. She has published a number of scientific papers during her award period on both diabetes and Sjögren's and has credited her SSF grant in those papers for her work in Sjögren's. We're excited about her innovative concept and look forward to learning more about her progress when the grant ends and as she continues her work. Here is the SSF write-up on Dr. Faustman's work so far, which will appear in the fall issue of the Sjögren's Quarterly:
Research Grant – Gland Regeneration
Denise Faustman, MD, PhD
Massachusetts General Hospital / Harvard Medical School
Boston , Massachusetts
"Examination of human spleens for a Hox11 expressing stem cell involved in salivary epithelial regeneration"
Dr. Faustman was awarded a second-year renewal grant for 2008.
First-Year Grant:
Scientists have demonstrated that Hox11-expressing spleen cells of adult mice/rats are multi-potent stem cells with the ability, under select conditions, to differentiate into insulin-secreting islets, salivary epithelial cells and bone. In the first year, Faustman answered the question: are Hox11-expressing stem cells found in abundance in the spleens of humans? Her findings show that in human post-mortem tissue, Hox11/Tlx1 stem cells are uniquely and abundantly expressed throughout adulthood in the human spleen. In fact, her lab found that the spleen of normal adults is the only site in the body harboring a reservoir of multi-lineage stem cells that express the highly conserved nuclear transcription factor Hox11/Tlx1.
Second-Year Goals:
In the second year of her grant, Faustman will determine if the stem cell regulatory gene Hox11 is expressed in spleen cells of human male and female donors and if expression varies by age and sex; if Hox11-expression is unique to the adult spleen or if it appears in other normal adult tissue; if human spleen donors with a history of Sjögren's syndrome show increased expression of Hox11 and an increase in the number of Hox11-positive cells as observed in NOD mice with salivary disease; and expand primary spleen cells in tissue culture and measure Hox11-expression at various stages of in vitro expansion to determine the potential for maintaining human Hox11-positive cells in long-term culture.
I love your idea about providing website updates on the work of SSF grantees. Continue to let us know your needs, and I recommend that you subscribe to the Quarterly in addition to your membership in SSF and subsequent receipt of The Moisture Seekers. You sound like someone who is well-educated and wants to stay on top of information in Sjögren's – all of which are important for each of us as we cope with living with this disease.
Kathy Hammitt
Katherine M. Hammitt
Vice President of Research
Editor, Sjögren's Quarterly
Sjögren's Syndrome Foundation
(conquering a serious autoimmune disease affecting 4,000,000 Americans)
6707 Democracy Blvd., Ste 325
Bethesda, MD 20817
Tel: 301-530-4420 Ext 215
Fax: 301-530-4415
www.sjogrens.org
I responded to Kathy Hammitt thanking her for her timely and thorough response and asked if I could share her e-mail with this forum. Her response was as follows:
You're welcome, and of course you can share my response with the members of Sjögren's World.
Best,
Kathy
I hope you all find this informative. Do any of you receive the Sjogren's Quarterly publication? I haven't yet found out where to subscribe, but I haven't had time to look too hard. I'll contact the SSF again if I can't find it.
I recently paid the membership fee and am waiting for the "Moisture Seekers" newsletter. I thought I had explored their site but must not have because I completely missed the "Sjogren's Quarterly."
Huh.
I'll go look again. Probably brain fog keeping me from seeing something real obvious!
Thank you Cathy for your gorgeous letter and posting for us!
Janna
Hi Janna!
I was happy to write the letter. I'm excited for the new site to be up and running. Hopefully, they'll provide a lot more info on the research tab.
I also couldn't find the Sjogren's Quarterly. I'll have to look into it more later. In the meantime, if you find it, please let me know.
Great to hear from you!
Cathy