June 25, 2010
The LAM Foundation is different from any thing I have ever been involved with. Being a LAM patient was not something I would have ever chosen for myself. Having LAM has been difficult to say the least. I found out about the Foundation after 2 lung collapses and surgery to repair my lung. The doctors told me I had the disease, but, they didn't know anything about it, and they would have to "check into it". I went home and found the Foundation on the internet. Within 1 hour I was speaking with the woman who founded the organization, Sue Byrnes. She spoke to me with such caring and compassion. She relieved many of my fears. I had been given some misinformation. Within 2 weeks I was seeing doctors that worked closely with the Foundation. This was in 2001. Ever since then these amazing people have helped me time after time with no regard to their personal commitments. When I have needed their help, they step up time after time. From phone calls when I am hospitalized, to actual rides to the hospital and staying at my side until my family could arrive. To me, these acts of kindness are above and beyond the call of duty. That is why I believe the LAM Foundation has been, and continues to be the most amazing group of people I have ever been privileged to call my friends. I know 24/7 they are working to find a treatment, and, or a cure. I also believe that the day will come when they succeed.
I've personally experienced the results of this organization in...
they have always been there for me in every way. They keep me informed about any new finds about my disease so that I can keep my local doctors updated.
Ways to make it better...
If I had to make changes to this organization, I would...
Try to get more funding so they could all take a paid day off!
What I've enjoyed the most about my experience with this nonprofit is...
The kinds of staff and volunteers that I met were...
selfless. They never seem to be able to do enough to make life better for us patients.
If this organization had 10 million bucks, it could...
Fund more research, raise awareness about our disease, help more LAM patients attend our yearly conference.
Ways to make it better...
I could have attended more functions.
In my opinion, the biggest challenges facing this organization are...
In today's economy I would have to say fund raising is even more difficult.
One thing I'd also say is that...
I respect each and every person that works so hard for our cause.
How frequently have you been involved with the organization?
About every six months
When was your last experience with this nonprofit?
Client Served & Have been a LAM patient and part of the Foundation since 2001.