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LAM Foundation
June 10, 2010

I was diagnosed with LAM in 1980, and fought a lonely battle with all kinds of complications from the disease. It was only three years ago that I learned of the LAM Foundation and signed up for the Listserv of patients. It was a revelation to learn about so many other women and their experiences with LAM. And the Foundation is always there to answer questions and give support. The annual LAMposium conference is a phenomenal experience, allowing patients access to researchers and doctors working on LAM, at the same time as providing a loving and learning experience for patients. I love this organization for its' ability to respond quickly to patient needs.

The Great!

I've personally experienced the results of this organization in...

Helping me be more informed about LAM and the efforts being made through research. And in being directly accessible to wonderful staff people for help and direction.

Ways to make it better...

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

Let more people know about the incredible dedication of the LAM Foundation to we, the patients. It seems to me that they are creative and do everything right!

More feedback

What I've enjoyed the most about my experience with this nonprofit is...

Connection to other patients and sharing experiences on Listserv, as well as the wonderful, very available staff

The kinds of staff and volunteers that I met were...

From executive staff to volunteers, everyone is exceptionally kind, involved and professional.

If this organization had 10 million bucks, it could...

Help find a treatment for this rare disease that destroys so many woman's lives

Ways to make it better...

All of my experiences have been exceptional

In my opinion, the biggest challenges facing this organization are...

Gaining awareness in the medical community of this rare disease so that women can be readily diagnosed; also, finding a "champion" to lead our campaign to raise funds and educate and serve. By that I mean a well known figure.

One thing I'd also say is that...

Thank you from the bottom of my heart for all the LAM Foundation has done for me and others

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

MY ROLE:
Client Served & I asked for and received information about LAM, spoke to doctors affiliated with the Foundation for help in understanding the progress of my disease.