Thursday, April 25, 2013
With April being designated as Sjogren's Syndrome Awareness month, I've been watching to see what other bloggers and health activists out there have been doing to put our disease in the spotlight of public attention. There's been lots of activity: The Sjogren's Syndrome Foundation has been making daily posts on their facebook page; Venus Williams has agreed this month to become an awareness ambassador for SSF, and then of course there's our Creativity Challenge here on Reasonably Well.
A reader recently sent this question to me; it appears that she has been frustrated at the lack of response to her efforts to raise awareness and fundraise for Sjogren's research:
I have a question about Sjogren's Awareness month, I wondered if you could query your followers.
First I set up a fundraising page, last summer, on FirstGiving.com, for donations to go directly to the Sjogren's Foundation. I emailed it to friends, family, and former co-workers (I had been out of work, and had just gotten on Social Security Disability). I made the first donation to get it started, then my friend made a donation. That was it.
I put out another small donation under anonymous to try to spur something.... still nothing. How disheartening.
Now for this April, I revised my page, sent out emails, and now on Facebook, info on April, 30 Days to Imagine campaign, blah, blah....
One more friend made a donation. Sorry for the rant, my whole point was I wondered if any of your other readers might be able to shed some light on what they've done for Sjogren's Awareness month, if anything, what's worked, what hasn't worked, or if it's just not worth alienating friends and family over something like this?......It's very sad and depressing to me that no one seems to care, other than my 2 friends. I am so thankful I have them! - J.
First of all, I want to congratulate this sjoggie on her dedication and hard work to fight for our cause: Awareness. Research. Early Diagnosis. Effective Care!
I can hear her frustration and disappointment in her letter when she felt as though she did not get the response that she was looking for; especially since she was not looking for financial contributions for her personally but for a non-profit organization that promotes research.
J: Please know that WE know. We care. We appreciate your efforts! And who knows? Even though the response wasn't what you had anticipated, it did initiate some kind of awareness and dialogue. You may have planted a small seed of awareness in others that may take root at some point in the future. It is through the efforts of patients like J. and the rest of us that progress can and will be made over time.
Have you any experiences with April Sjogren's Awareness month that you'd like to share?