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jeanne10

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1 reviews

Review for Lam Foundation, Cincinnati, OH, USA

Rating: 5 stars  

I was formally diagnosed with LAM, November 2009. I had Sue and the rest of the foundation walking by me side by side through the entire process. They helped me find a doctor who was familiar with LAM and get great care. They also are available at any time to answer my questions. They have made me feel less lonely, having such a rare disease. They make us feel like a great community. We have a site where we can talk to other women in all different phases of the disease, and from all over the world. To have a rare a disease, the LAM foundation is the best.

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

The material they send me, allows me to help my doctors treat me better. They help us stay up to date with new information and studies. Because of them, I will be able to go to NIH this summer to participate in a study of AML's and LAM.I

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

the connections I have made through them with the other woman with LAM.

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

so caring. They took time to answer all my questions, guide me to he best resources, and simply provide me a listening ear when I needed to talk.

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

bring more researchers together to work on a treatment and hopefully some day a cure!! It would save woman's lives all over the world.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

Role:  Client Served & I have LAM. I am able to use the materials they send out to also spread the word.