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Endometriosis Association, Inc.
May 18, 2013

I first came across the Endometriosis Association when I was diagnosed (belatedly, as so often happens) with endometriosis. I became a member and received the newsletter and publications, and right away I was impressed by the combination of “heart” and science in the EA—the commitment to building a support community for women with this mysterious disease while serving as a catalyst for groundbreaking scientific research. I was even more impressed when the EA uncovered the link between endometriosis and environmental pollutants like dioxin, which helped the medical community to understand the misnamed “career woman’s disease” in a much broader way. The more I learned about the EA’s work—the collaborations between laypersons and doctors, the building of a global support community, the careful data gathering, and the independent fundraising for cutting-edge research--the more respect I had. In fact, I found the EA’s approach so remarkable that I wrote a sociological article about it and documented the organization’s history so that it could serve as a model for others. While doing this, I read many, many personal testimonies about the EA’s life-changing work. I’m now an advisor to the EA, and I strongly recommend the EA to anyone who wants the best information and support relating to endometriosis. The EA’s work has always been mostly membership-funded, and while it stretches every dollar to the maximum limit, it would certainly benefit from more funding. My personal experience and my research both tell me that becoming a member and making any donation will have a huge multiplier effect.

Ways to make it better...

If I had to make changes to this organization, I would...

find more funds and staffing to support its work

More feedback

Will you volunteer or donate to this organization beyond what is required of advisors?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

MY ROLE:
Advisor