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sew-retired

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1 reviews

Review for Lam Foundation, Cincinnati, OH, USA

Rating: 5 stars  

I am 55 years old, live in Nova Scotia Canada and I am categorized as having Mild LAM and I am stable at the moment. I was diagnosed in 2004 after my lung collapsed twice. After a biopsy & surgery to attach my lung to my chest wall I was dumbfounded with the diaganosis of LAM. Fear, anger and disbelieve were just a few of the emotions I felt. My respirologist told me about a Natural History Study at the NIH & I signed up. I was contacted by the LAM Foundation & was sent some literature about LAM, found out there was an email community for LAM patients that is wonderfully comforting & informative. Thank you LAM Foundation & NIH for being there for us "Lammies".

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

The fact that they know what I'm going through.

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

Caring & knowledgeable.

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

Reach more women and educate more Doctors

Ways to make it better...

Couldn't say.

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

Short funds.

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

Thank you!

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 was referred to the National Institutes of Health to participate in a Natural History Study for LAM & was contacted by Sue Byrnes at the LAM Foundation. She helped me understand that I was not alone.