Does Anyone Plan to Attend the SSF's National Conference near Philadelphia?

[A Mom on Spin]

Hello all~

Was just wondering if anyone was planning on attending the Sjogren's Syndrome Foindation's annual patient conference which will be held March 31 and April 1st in Cherry Hill, NJ.  Since it happens to be in my home state, I'm thinking about attending. Would love to meet a fellow Sjoggie and gain some more insight into our disease.  Also, Dr Julius Birnbaum will be speaking about neurological complications and I happen to have a long-awaiting appointment with him the follow week at John's Hopkins.

[warmwaters]

I won't be able to attend, but I do recommend it. I did one several years ago, and found it very useful.

[SjoDry]

I am undecided, but should since it is fairly close.

I haven't polled my SS group members to see who may be going.

Take care.
SjoDry

[Pete0211]

I keep thinking about it, since I can get both the conference, a family visit, and some house hunting in.

[SunshineDaydream]

This looks interesting. I might go. Thanks for posting.

[A Mom on Spin]

Thanks for your replies.  I'm really looking forward to going, and especially to meeting others with Sjogren's.   I've read that there are 4 million of us living in the US but I have yet to meet a fellow patient.  Go figure!

[Nomad]

Whoever goes...can you please come here and post any major findings/interesting or helpful news? Thanks

[A Mom on Spin]

I'm certainly happy to report back after the conference.

Here's the link to the agenda and lineup http://www.sjogrens.org/files/brochures/NPC2017.pdf

Please let me know if you are particularly interested in any one area.

Liz

[CureSjogrensNow]

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?

[Pete0211]

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?

If I do show up, I'd like to sit next to you, and we can heckle like the two old guys in the muppets.

[CureSjogrensNow]

Pete,

I think I am in love.

[A Mom on Spin]

Pete and CSN,

I can certainly understand how living with this currently incurable disease and its lack of research and funding can cause someone to become frustrated and disgusted. In fact, I was recently hospitalized with septic shock after just two weeks on Imuran - my rapid drop in white blood cells an extremely rare side effect of a drug never designed for Sjogren's.  Yet after my close call, I can tell you that living a less-than-perfect life WITH Sjogren's beats the alternative.

I am attending the conference with and for my daughters - two of which have been diagnosed with lupus.  I supposed that I have resigned myself to the fact that a cure won't be found in my lifetime, but perhaps in theirs. 

And if the money raised by the SSF doesn't do it, who will?  Who wil advocate for government research funding? Who will press pharma for new drugs? Who will continue to reduce diagnosis time, raise awareness, and - in doing so - swell our numbers so that both of the above will find us worth allocating resources to?

I may not be sitting in the front row, but I won't be heckling.

http://www.sjogrens.org/files/brochures/NPC2017.pdf

[SjoDry]

Pete & CSN,

I can appreciate your frustrations, they come with the illness. But I have to say that I am feeling more positive and encouraged about the amount of research that is being done, as well as the amount of education and diagnostic criteria that is being established. SS is no longer a stagnant, unknown disease anymore. It may not be well-known yet, but that is changing.

4 or 5 years ago, I attended a SSF Patient Conference in which the SSF gave out grant monies to some physicians doing research. It so happened that one of those physicians is a doctor who lives in my city of Pittsburgh. I had never even heard of him & was shocked that anyone local was even doing research on SS. I made a b-line across the room to introduce myself & find out what kind of research he was doing? It was gene research.

A month or so ago that same doctor (the head of Gene Research at Allegheny Hospital) called me. He wanted to be a speaker at my next (spring) SS support group. He explained that he wanted to share his research & findings. He has created a medication for the salivary glands. He said that he still needed to create a delivery system for it. I asked about what that was? Here was his response:

Dr. Passineau:
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.

I did not ask when Dr. Passineau started his research, but with several doctors and drug companies all working on research and medications, I think the Sjogren's landscape is changing in a very positive direction. My Rheumy is on the committee that is writing the diagnostic criteria for SS. We talk fairly frequently (since we refer patients to e/o). He is extremely excited about the huge amount of research that is currently being done for SS both in the U.S. and in different countries.

Those medicines may not be ready as soon as we would like them to be, but at least we can feel encouraged that we know that they are coming. Maybe  you could check with the SSF and find out how much research is really being done. That information might change your whole outlook.

Take Care.
SjoDry

[CureSjogrensNow]

I am so impressed with all of you, your courage and faith. A Mom - I will pray for you and your daughters. Personally, I think it is only to the good to challenge authority. Look at our gay brothers who were faced with the death sentence of AIDs. No matter the approach - here is to a cure.

[Pete0211]

Heh - y'all take my sick sense of humor too seriously