Steven Young, President of ALCMI, was an invited panel speaker at the ALS Advocacy Summit held in Cambridge, MA September 26-27. For the first time, the meeting's sponsor Biogen Idec helped bring together senior representatives of ALS (Amyotrophic Lateral Sclerosis) and rare disease patient groups form North America and Europe to discuss disease awareness, collapsing the time from diagnosis to treatment, and emerging therapies.

The Summit kicked off with a panel of patient group leaders from outside ALS--representing Lung Cancer (ALCMI: drug discovery and development), Parkinson's Disease (Parkinson's Action Network: lobbying and health policy) and AIDS (AIDS Action Committee: external developments forcing patient groups to adapt). The goal of the panel was to provide best practices and guidance to the ALS patient advocacy groups for the latter to more proactively impact advancements against this deadly, and currently incurable, disease through results-oriented biomedical research and targeted advocacy/education.