June 17, 2011
I am Nadin and I have LAM. I think the LAM foundation is a great nonprofit because after I was diagnosed; the LAM foundation was my doctor’s point of information and also my family’s. Since it is a rare disease, many doctors have no clue about it. I have learned with experience now, to print the basic information from their website and bring this to every new doctor that I have to meet! They practically teach you about the disease through their website, they connect you to LAM doctors so you can be evaluated, they share stories and connect you to other LAM patients, they gather money for new research and find a cure, they create awareness about the disease here and (slowly) abroad. I remember when the founder of the foundation called me to invite me to the LAMposium . I think she does this to every new patient that is diagnosed, and to me that shows that they really care about the patients. Also with the creation of the LAMposium, which is a 3 day event (and patients don’t have to pay anything, other than getting there) you get to meet the docs that are doing the research and ask tons of questions!
I've personally experienced the results of this organization in...
in knowing what to expect when I have had lung collapses and not freaking out, and also suggesting to some doctors what is the best thing for me becuase they lack the knowledge about LAM. Also, successfully getting a Lung Transplant and making my disease something worth fighting for.
Ways to make it better...
If I had to make changes to this organization, I would...
I would have a translate version of everything like their website, handbook, DVD, etc.
Will you volunteer or donate to this organization?
How much of an impact do you think this organization has?
How did you learn about this organization?
When I was diagnosed, the doctor found their website and he told me about it.
When was your last experience with this nonprofit?
General Member of the Public & I recieved help learning about LAM by getting handbooks, meeting doctors and other LAM patients.