Mission: The lam foundation urgently seeks safe and effective treatments and ultimately a cure for lam.
Results: go to http://www.thelamfoundation.org/images/pdfs/milestones.pdf
Target demographics: Women in their child bearing years 16-90
Programs: Research costs - in 2017 the lam foundation and the ts allicance held a joint conference for scientists in washington dc. We had 233 researchers and medical professionals in attendance at the conference from 35 states plus the district of columbia and 21 countries. These researchers and medical professionals spent 2 days in meetings to further research for lam and discuss care for patients living with the disease. In november, the lam foundation held a patient benefit conference wherein thought leaders and researchers met to form ideas as to how to improve the life of patients living with lam in the next five years. As a result of this conference, grants will be awarded in 2018. In 2017, the foundation expended $520,791 in grants to further the research for a cure.
patient services - in 2017 the lam foundation and the ts alliance held a joint conference for scientists in washington dc and held a lamposium. We had 73 lam patients and 37 family and friends of lam patients in attendance. In november we hosted the patient benefit conference and lamposium in la and there were 94 lam patients and 43 family and friends of lam patients in attendance. The foundation sponsored 30 lam regional educational meetings in partnership with 17 lam clinics, educating more than 700 attendees across the country. The foundation also produced "journeys", a publication which provides updates on clinical research and how to live with lam. The foundation registered 187 new patients in 2017.
clinical - the lam foundation supported its 59-member global lam clinic and research network via three hosted webinars, and an in-person sab and clinic director meeting at the american thoracic society annual meeting in washington dc (58 attendees) in may. The foundation supported lam clinic site participation in the midas trial via coordination of the clinical site agreements and payments.
I was diagnosed with LAM in 2007, and after discovering a lot of out dated information on the internet, turned to the LAM foundation. I was given much needed emotional support from the staff as well as information and contact info for fellow LAM patients. LAM is such a rare disease, and many patients who have LAM, do not know it. The foundation also works on increasing awareness of this disease and it's symptoms. Without this foundation, I would not have the resources that I have been exposed to.
I have LAM, and the week that I was diagnosed, I contacted the LAM Foundation and have been so greatful for them! They are all so kind and caring, and have made things so much easier for me. They have offered literature and advice more times than I can count. I also am involved in the MILES clinical trial through the LAM Foundation, and it has also been my saving grace.
The LAM Foundation is such a greatly put together foundation. Very organized and incredibly helpful. I am so blessed to know of them and have them as a resource!