Wednesday, June 27, 2012

Smoothies for Sjogren's

My June issue arrived tattered and dog-eared. Poor thing. I hope it's because someone in a mail room somewhere was paging through it and reading EVERY WORD. 

The June issue of the Sjogren's Syndrome Foundation's publication The Moisture Seekers is, as usual, packed with goodies. Of particular interest in this issue was the annual list of SSF volunteer awards which were announced at this year's National Patient Conference held in La Jolla, California.

All awardees contributed in impressive ways to the education, advocacy, and awareness of Sjogren's syndrome, but the accomplishments of the recipients of the Development Services Award -- The Sosin family -- were exceptionally inspirational.

This from June 2012 The Moisture Seekers Newsletter:
Development Service Award -- The Sosin Family 
From the moment their daughter, Paula, was diagnosed in her teens, the Sosin Family has rallied behind her. The Sosin Family exemplifies an award-winning family. 
The Sosin family started by getting involved in their local Sjogren's Walkabout by raising funds and bringing a team of family and friends to join the Walkabout. To date, the Sousin family has raised over $22,000 for the SSF.  
Part of these funds each year come from events and promotions using their family-owned Ben & Jerry's store in Maryland. Each May, the store holds and event called "Smoothies for Paula." This promotion gives the SSF $1 from every smoothie sold in the month of May.  
And as if "Smoothies for Paula" wasn't enough, the Sosins once again stepped up to support the SSF by using their storefront as a way to increase awareness. Each year in April, Ben & Jerry's holds a nationwide Free Cone Day. The Sosin Family again found a way to increase awareness and raise funds by having the SSF manage a table at their store on Free Cone Day to collect donations. In 2011, the SSF collected over $1,000 in donations and spoke to over 900 customers who came in for their free cone.  
In addition, both Paula and her mom have served as Awareness Ambassadors for the SSF and just recently, after graduating from the University of Delaware and moving to New York City, Paula volunteered to start a "Under 40 with Sjogren's" support group.  
So when we say it's a family affair, it really is! Marc and Bonnie (Paula's parents) and Yale (Paula's brother), along with Paula's determination -- are not done yet! They have vowed to continue until sjogren's is well-known nationwide! 
Yeah, Sosin family! All Sjogren's syndrome awareness and research funding is desperately needed, but spotlighting the need for early diagnosis and treatment of young sjoggies is especially important.

If I were in their neighborhood, I'd spring for a Smoothie for Paula. What a great idea. Wonder if they have mango......mmmmm........

If you, like me, were unable to attend the 2012 National Patient Conference, you can purchase audio CDs containing six of of the presentations by visiting the Sjogren's Syndrome Foundation website, or by calling the SSF office at 800-475-6473.


Amy Junod said...

My Moisture Seekers mag got was delivered to a neighbor's house. My neighbor sheepishly told me during a Bunco night that it had been sitting on her counter for weeks. She said it didn't seem like something important. It was a mini magazine. I told her it might be something associated with Sjogren's Syndrome. It opened up a big conversation. No one even knew that I had Sjogren's.

Am I the only one that is disappointed that the National Patient Conference CDs are for sale? I teeter totter with the Foundation. I really don't think fundraising should come from the circle of folks you do the advocating for. I think if they spread outside of our little Sjogren's circle it would also spread the word about Sjogren's. The Sjogren's does great work with research but I wish someone would help with the whole fundraising thing. It's off track.
When we did our local Sjogren's Walk About we had to donate 75.00 to get a t-shirt. Those things are crazy cheap and really would have done more to spread the word by giving them away. Allergan was the sponsor. (They are the folks that make $$$s with Botox btw)I'm sure they would have had connections to get the shirts to hand out along with the info on Sjogren's.
Love the ice cream fundraising idea. Sounds like a cool bunch of people.
(Ok...BICA will step off soapbox now)

Anonymous said...

I know that this is an old post, but I felt the need to respond as I agree. I don't mind paying a small fee for the National Conference CDs, but $16 per CD?!? Wow. Way too expensive. How about $25-$30 for all of the conference material which would basically fit on one $.50 cent DVD.