Tuesday, July 23, 2013

World Sjogren's Day 2013

So whatcha doing to commemorate World Sjogren's Day? It's today, in case you didn't know.

I'm wearing my blue Sjogren's Syndrome Foundation bracelet, and of course putting up this post. But to be honest, I'm not sure what else to do.

There's so much to be done. Like: raising disease awareness, raising research funds, educating healthcare providers AND patients, and evaluating moisture replenishing products, for starters. I feel kind of helpless when I think about the size and scope of the items on that list.

I guess the best thing for me to do is ignore the enormous challenges and focus on small but concrete tasks, as well as promote the spectacular efforts of others. For example, I'm pretty proud of our creativity challenge and the awesome results which included Super Hydrating Nixie, created by Amy and Cole, and who would be an excellent mascot for our cause, if you ask me.

Nixie, you're fabulous. Just fab. 

I'm going to send pictures of Miss Nixie over to the Sjogren's Syndrome Foundation, and post her picture over on Sjogren's World Forums.

Hm. I'm thinking Miss Nixie would look stunning on a t-shirt. Now there's an idea........

Aside from chugging water, eye-dropping frequently, performing meticulous oral hygiene, carefully parceling out energy and slathering sunscreen, what are your plans for World Sjogren's Day?


Luciana DeVito said...

I love Nixie, we should make it a pattern for us knitters and crocheters with SS. I too am going to put on my Sjögren awareness bracelet, how could I forget?!? I would like to be able to volunteer somehow. Any ideas?

Anonymous said...

Dear Julia,

About three years ago, you completed a survey that I conducted about health blogs. I greatly appreciate your help with that project. I am working on a follow-up study and writing to see if you would be willing to participate. The survey takes about 20-25 minutes to complete and you may receive a small gift card for your time. If you are willing to participate, additional details about the project and the survey are available at the following webpage:


Thanks for your consideration.

Best Regards,

Steve Rains, Ph.D.
Associate Professor
Department of Communication
University of Arizona

Anonymous said...

The Nixie hydrating drop is great. Hope you post this to the Sjogrens foundation site.
Today I wore my Sjogrens Walk About tee shirt because just wearing blue doesn't mean anything to anyone other than our fellow Sjogren Foundation members. Everyone knows what a pink ribbon stands for, but no one knows or could recognize the Sjogrens Foundation logo. Perhaps little Nixie will get the attention of the Foundation.