Ideas on spreading the News

The amount of information that is becoming available is vast. In a recent SSF meeting in USA  there were 10,000 (TEN THOUSAND) Rheumatologists and researchers in attendance. Sjogren’s is continuing to receive considerably more recognition and attention from practicing reheumatologists and researchers as well as potential corporate partners looking to develop clinical trials and biologic therapies for Sjogren’s. Springing from this research and knowledge and hopefully as we gather screen and learn, a solution will come.

 However back in the real world every day people have to put up with the daily problems that is bought on by SS.  The same old  problems of almost shouting and still not being heard continue.  GP’s are often pressured and have at best a scant appreciation of what is going on.
Yesterday a pleading call from a dear friend, not just a member of the Sjogren’s Society. Who is prescribed large pills (in size) from her GP and in swallowing they get stuck on the throat wall and yes she can still feel the spot days later.  
This has prompted a slight ‘split’ in our focus.  Over the past decade we have noted the same comments comming back from many speakers. They get a deeper appreciation  when they hear the problems first hand.  I am planning a few meetings just for GP’s and Rheumatologists. Maybe to dentists as well.
How this will pan out is not quite decided, but the ‘germ has sprouted’. Please continue to take information, brochures and newsletters to your doctor, even if discarded it has sown a seed-a reminder that Sjogren’s exists and there is a Society that is interested in those suffering.
Therefore  it is up to us, this includes all members, your partners and even friends and family if you can rake them in. Little voices can be heard if repeated enough times, so go fly the Sjogren’s syndrome  banner.

Also we may be able to fit in a series of one-day meetings in smaller centers so that this message can get to all SS members. Yes, there are plans afoot.  
This has become a plausible concept as we now have some funds. Costs overtook us for  some time and despite a deep desire to keep the membership fees and meeting costs low, it just compounded resulting in funds so low that we did not have enough to post out more than one, perhaps two newsletters per year.  Personally there have been a few disruptions over the past three or four years that have precluded our self-funding such ventures.

This is healthier now and this gives more flexibility and hopefully some exciting new approaches.
Commercial support can also be looked at too but only when we have something of commercial value.
 Each month I receive a series of abstracts and as I scan these I note that the bulk of them are about Diabetes. All sorts of research, but little on even Lupus,  Scleraderma and hardly a mention about Sjogren’s syndrome.   So we have to go searching  mainly in the dedicated Sjogren’s sites.
On the research front there is some information and that is really not greatly changed since
Dr Rushton went to France  I think 4 years ago.

David Zimmerman (Hon President)
(extract from Dec 2012 Newsletter)