The Sjogren's Syndrome Foundation is celebrating it's 30th anniversary this year, and the latest Moisture Seeker newsletter is dedicated to this milestone including a two-page timeline of Foundation accomplishments, a historical perspective about Henrik Sjogren, and my favorite: excerpts from a 2008 interview with SSF founder, Elaine K. Harris. Here's a sampling:
Q: What's the best advice that you ever received as a Sjogren's patient?
A: Way back in 1982 when my doctor told me that there was nothing he could do for me, that I just had to "learn how to live with it," I ran out of his office crying. In order to learn how to live with Sjogren's I had to become an informed patient. It wasn't easy because there was no SSF, or even a local support group, no newsletter, no Sjogren's Syndrome Handbook. It was the absence of these resources that provided the stimulus to develop such resources, leading to my forming a local Long Island support group which evolved into the SSF.
And evolve it did. This from the newsletter section titled Breakthrough Bullet:
When the Sjogren's Syndrome Foundation was first started by Elaine Harris, board meetings were held in her living room and a cup for donations was passed around at meetings to raise funds for the office supplies such as stationary and postage. While the Foundation has always been a patient focused organization, it has grown from a "Mom & Pop" operation that was started 30 years ago to an internationally recognized organization shaping the industry in terms of research, education, patient care, advocacy, and new therapies.
Countless sjoggies have been directly impacted by the results of Ms. Harris' initiative and hard work. I know that I certainly have. How about you?
3 comments:
It makes me want to cry in gratitude.
That was a huge amount of work for Elaine to start from scratch and build such a successful organization.
The SSF was helpful in to Lee Durdon when the Sjogren's Society of Canada started. In 2005 Lee was looking for more people to join an Ontario support group with the Sjogren's Syndrome Foundation.
In 2006 she formed the Sogren's Society of Canada which is going strong and has a high quality annual conference.
Hi Julia... I know I am a little late in my response but I very much can identify with this right now. I have joined Team Sjogrens and am in process of trying to raise money for the Foundation. However from the last several events and this one it seems that an awful lot of Sjoggies often don't want to actively become involved or contribute. I know many are strapped with medical bills and others too ill, however it is disappointing to see those capable not fighting for others or even themselves. How do we get more of our sisters and brothers interested in making a difference?
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