Thursday, April 25, 2013

Sjogren's Syndrome Awareness: Every Effort Counts

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, 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?


Anonymous said...

I, too, want to thank J. for her efforts. I am a fellow sjoggie, and if I had her info, I would make a small donation!

I am a one person office, and I too have been struggling with what to do. I knew fundraising was not something I could do this year, but I did "like" the SjS foundation, and a sjoggie blogger on facebook, so their information shows up on my facebook feed. It isn't much, but it is a start, and I have actually received a comment or two from my friends. I also created a Board on my Pinterest for Sjs. Again, a small thing, but at least it is somethingl

If we can combine all of our small things, maybe they will grow. And at the very least, we can all support each other.

I don't know what I would do without Julia's blog, how about you guys? Thanks a million Julia, for sharing so much with us.


Shara from Seattle said...

I participated in your art contest. It was a fun thing to do, just like art therapy.
Money is tight.
I agree with Julia, just planting the seed in somebodies mind that this disease exists is a good thing.
Within my own family I am sill having to explain what Sjogrens is. This is such a tricky syndrome. My kids are becoming more sympathetic to others in the community that have 'invisable' diseases.

Amy Junod said...

As an Awareness Ambassador I received an email this morning from the Foundation.
They have some great plans in the works for getting information out the the community.
I am sorry J. I also had my own FirstGiving page for our Sjogren's Walkabout last year and I didn't get anyone to sign up. I am not a fan of FirstGiving. (Maybe someone can explain why the funds are funneled through them? They charge a fee for their services.)
I don't think that it's not caring on their part. Most people just don't know the impact on our daily lives.
Being Sjogren's Awareness Month I have tried several times to write a post on my own blog. I have struggled to write "My Sjogren's Story" and continue to find it hard to finish. It's a therapeutic exercise though. Knowing that I only have 30 seconds to grab a reader's attention before they say, "Eh." and move on is troublesome. It's hard because this is what it's like when speaking face to face too. I know many of your readers can relate to that glazed over look people get.
As motivation for getting my post done I will use a copy of your artful Sjogren's Syndrome "robber". I plan to throw darts at it.

Jenny P said...

Amy - I'm also not a FirstGiving fan. I've talked to the SSF about it but they weren't up for changing at the time...maybe if more of us voice our concerns?

J - as everyone's said, I too agree this is a hard, hard cause to convince people is exciting. It can't be seen; it isn't dramatic (to outsiders); it isn't 'sexy' or well known or understood. And it's chronic - few people get "into" chronic issues. It's as if we're ungrateful for not being healed or something.

But there is a LOT of good that comes from even a LITTLE awareness. Today I had a conversation about Invisible Illness Awareness Week. Over the past few weeks, I've had the chance to at least explain Sjogren's to dozens of people in an unlikely circumstance. I've been vocal at work so I was recently contacted for information when a fellow employee began seeking diagnosis with what's possibly Sjogren's. It adds up.

As for getting more visible & measurable results, it occurs to me that you're doing good things but they are all passive and from afar. I know it can be awkward at first, but don't underestimate the impact of a personal approach. It doesn't have to solicitous, intentionally getting together to hit them up for donations or something, but work it in to regular conversations. If you can't get out to see people so much, find time to have social phone calls or something. At a minimum, send individualized emails, though I'd encourage other methods over this one. People don't donate because they care about a random condition, they donate because they care about you. Let them know how important it is to you and you'll see a better response.

Unknown said...

I recently found your blog and I love it! So many online blogs/support groups are depressing but yours gives hope. I love the little tips you give. I have learned so much! Thank you!!! I am 33 years old. I have four kids and I was diagnosed 3 years ago. Keep up the awesomeness!!!