Author Topic: Does Anyone Plan to Attend the SSF's National Conference near Philadelphia?  (Read 4953 times)

CureSjogrensNow

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Pete: Et tu, Brute? Now I am back to looking for the angry among us. Where are you? Am I really the only one?

Linda196

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Disclaimer..I'm posting as a member, not an administrator, since research is a subject I hold dear. The views I express are my own, not those of Sjogren'sWorld.org

Remember, in June of 1921, Diabetes was a death sentence. All that had been accomplished since the time of Hippocrates was to learn some sort of relationship between food, enzymes, and activity, and trying to modify diet and exercise, with deplorable results; people existing, half living, with meager nutrition, weakness and illness, until they succumbed to early death from "consumption", heart failure, kidney failure or "dropsy".

On July 30, 1921, physician Frederick Banting and medical student Charles H. Best  injected a hormone they had isolated from the pancreas of a healthy dog into a diabetic dog and found that it effectively lowered the dog's blood glucose levels to normal.

In January of the next year, having worked extensively to purify an extract that had, on first attempt, caused a severe allergic reaction, the successful treatment of humans was started , with dramatic results.

The initial plan came to Dr Banting in October 1920. In 15 months he had accomplished huge advances in the management and treatment of Diabetes (I know, not a cure and it still causes problems, but death is no longer automatic!) From his work, leaps and bounds of progress in types and dosing of insulin have made Diabetes a manageable condition, not a death sentence.

That is why we support research and discovery, looking, hoping, for the Dr Banting of the autoimmune world, with one innovative idea, and the backing to pursue it.

And YES, I'm sure there were some very angry diabetics in 1921. Hopefully they received treatment, and if they felt the need, were able to nurture that anger for many many years!
« Last Edit: March 03, 2017, 03:21:49 PM by Linda196 »
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A Mom on Spin

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Yes, as CNS says, here is to a cure!!
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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

irish

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I will not be going as I could not take the trip, etc. However, one thing to keep in mind is that not only is research going on for Sjogrens but for every other autoimmune disease that is known. This is a very good thing as autoimmune diseases all seem to overlap and one disease research group may find some things that will help another disease. Actually, it may well be that one thing will cure all of they autoimmune diseases. One can only hope. Irish

warmwaters

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I can report back also. I am right here and I am going. But not happily or with hope. Grudgingly and with a chip on my shoulder. I have seen too much. There is no development that will happen in our lifetime that will make any difference at all.  And anyone who thinks otherwise hasn't watched their big time research doctor hem and haw about that when directly asked. That's the "real news." I am sure there will be a bunch of mouth sprays and ouchie pads and balms and potions for sale and rah rah speeches to raise money. When will we as a group stop praising our martyrdom and demand answers? Enough is enough.

Is anyone else as disgusted as I am? Anyone?

To try to offer you hope, my rheumy says there are 6 new meds in the clinical trial pipeline.  I realize that means that help may not be quick,but that there are people actively working on the problem. And we could have more options in our lifetime.

 I'm as frustrated as you, but I'm not sure who I would "demand answers" of. There needs to be more research to actually understand what the underlying mechanisms are, if all Sjogrens patients are dealing with the same disease, and how to address the various symptoms.  The time to diagnose has been reduced in the US from a mind bending 6 year average to a slightly less terrifying 3 year average. This has mostly been an education effort. So I see where I need to put my effort is in supporting research and education, since I don't personally have the skills (or the energy) to do medical research.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

CureSjogrensNow

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Let me explain what I mean. AIDs patients were not content to simply "wait on the research." They protested, lobbied, stormed the FDA, demanded research dollars, etc. Yes, for the most part, Sjogrens is not a terminal diagnosis. However, the suffering and cost is incalculable. I won't say where I am treating - but believe me, if there were good news, even in the Fiji Islands, I would have heard about it. Please no more be patient, miracles do happen, wish upon a star, yes, there is Santa Claus, Virginia responses. Where are my angry, critical thinkers? Where are my science-based, evidence-oriented, no BS Sjogrens Warriors? What do we want? A cure!! When do we want it? Now!!!

SunshineDaydream

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Reminder that registration price increases after 5:00 eastern today.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

SunshineDaydream

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I am going to the conference this Friday and Saturday. Did anyone else from here register?
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Pete0211

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I won't be making the trip up there - have too many medical appointments over the next couple of weeks.
Male 49 y/o; Undergoing Primary SJS diagnosis process; Cevimeline, Ubiquinol, Restasis

A Mom on Spin

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I am a bit surprised that no one else has registered but I certainly would not be going if it represented a major expense or travel wear-and-tear for me.  As is, I'm sure I'll be exhausted at the end!  Hope I get to see you.

Liz
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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

SunshineDaydream

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PM sent, Liz. Looking forward to meeting you!
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Nymph

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When I first heard os Sjogren's five years ago, there was very little research and awareness was low. My old dentist told me, "You're too young for that!" Now I find that younger doctors are much more aware, if not knowledgeable. The amount of research has mushroomed. Yes, we still have a long way to go and, yes, we are still far behind other comparable diseases. However, I am excited and proud of what has been achieved in a relatively short period of time and it appears to me that we have some excellent scientists and clinicians dedicated to our cause. The main hurdle has to do with funding and the overall problems within our healthcare system, IMO. When I consider the Sjogren's Foundation I am quite impressed with their use of resources. I am also very happy that they are teamed with AARDA and agree that a cure could come from anywhere within the world of immunology research.
38 y.o. teacher; anti-CCP+, RF+, otherwise seronegative; POTS; Plaquenil, Allegra, Depakote, Neurolink, C, probiotic, multi-V, magnesium, quercetin, NAC, DHEA, fish oil, D3, turmeric, ubiquinol; <3 my neti pot

quietdynamics

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Picked up DH Thursday from having angioplasty.  That after being hospitalized a few weeks prior. 
So even though tired.. knock me over.
I called to see if I could purchase for on 4/1 .. sadly no.  Rather lose less money if I could not get there. Ok.
I did learn that Cds' should be available for sale on Foundation site.
For information/learning this is actually better for me as I can playback and hopefully absorb more information.

Hope those at conference are enjoying! And learning.

« Last Edit: April 02, 2017, 11:16:45 AM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

CureSjogrensNow

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I was there.

A Mom on Spin

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Of course I was there with my daughters, both of who got energized to go out and raise money and awareness.  Can't say there were any momentous announcements but the panel on clinical trials was quite informative.   The SSF is doing a good job partnering with pharma cos like Bristol Myers Squibb and Novartis who now seem to be committed to find new drugs to treat systemically.  Problem is it takes 12 years to bring a drug to market. 

I was really impressed at the quality of physicians who led the different sessions, as well as their commitment to helping their patients.

Liz
www.mysjogrenslife.blogspot.com
https://www.amazon.com/author/lizwilkey
Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy