June 16, 2010
The LAM foundation is a wonderful non-profit organization. Most importantly, it provides emotional support and A BREATH OF HOPE for those of us with this disease. It also funds LAM research, and provides education to medical professionals and patients about this rare disease.
HOPE is the kind and calming words of Sally Lamb on the telephone.
HOPE is being able to connect with other patients.
HOPE is knowing that this organization provided leadership and funding that led to the first clinical trial of treatment for LAM.
HOPE is LAMposium, an annual symposium for both patients and researchers. It provides a forum for researchers to share their progress and make new plans. It provides patient education, and a place for patients with a rare disease to meet someone else with that disease. Patients meet researchers, researchers meet patients. It is encouraging for young researchers to meet a patient that says, "I will pray for your success". It is encouraging for patients to see the time and energy that researchers put into their work.
HOPE is education for medical professionals, because sadly, many physicians have never even heard of this disease, so it often is not diagnosed or is misdiagnosed.
A breath of HOPE - the LAM foundation.
I've personally experienced the results of this organization in...
the information that they provided about my disease and how to live with it, in connecting to other patients with this rare disease, in in attending LAMposium. They gave me HOPE.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
Client Served & I received encouragement, HOPE, education, and a connection to other women with LAM, and information on research efforts in LAM.