We are excited to provide this opportunity for ALS patients, families, caregivers, neurologists, researchers and collaborators to learn about the newest research out there and how to lend support to each other.

Interactive presentations and open discussions led by some of the world's top researchers in the field have provided ALS patients the ability to ask direct questions of the folks which funding for research goes.  This remarkable event places all ideas on the table and provides each attendee the ability to help shape how decisions are made in advancing ALS research.

Last year's Summit created some of the most lively discussion yet and one of the most unique opportunities for patients and researchers to have an interactive discussion about approaches taken to discover a treatment or cure for ALS.

The two-day event featured several labs tours given to nearly 100 people followed by a major research symposium held at the Museum of Science (MOS) in Boston. At the MOS, Dr. Steve Perrin of ALS TDI provided an overview of the power of mapping the genetic and protein interactions in the disease for creating a list of potential drug targets.

Dr. Raymond Onders (The Cleveland Clinic) provided information on his diaphragm pacing surgery.  Dr. Dale Lange (Mt. Sinai Hospital) provided a presentation on a clinical trial he conducted on a potential therapeutic and Dr. Hans Kierstead (California Stem Cell, Inc.) gave a lecture on the potential for stem cell usage in the effort to bring about an effective treatment for ALS.

2006

After a successful start, the Leadership Summit grew out its space at the Massachusetts Biotechnology Council and moved to the Hotel @ MIT.  In June 2006, ALS patients, families and friends gathered in Cambridge, Mass., for ALS TDI’s Annual Leadership Summit. The two-day conference was packed with lab tours and research presentations, plus plenty of socializing.

The second summit featured presentations from John Lincecum, Ph.D. (ALS TDI), Robert Bowser, Ph.D. (University of Pittsburgh) and Dan Benjamin, Ph.D. (ALS GEN, Inc.).

The Summit helped scientists put a face on the disease and helped patients and families get to know the people behind the research studies. A special screening of "So Much So Fast" as well as an exciting Awards Dinner followed the Summit which created memorable highlights for all in attendance. Read More in the ALS TDI Newsletter here.

2005

The inaugural Leadership Summit was held in the fall of 2005. The summit included an Open House and tours of ALS TDI followed by seminars held in the executive offices of the Mass Biotechnology Council (MBC) in Cambridge overlooking the Charles River. Several ALS patients participated in this first-time event which included an early look at the Apollo Projects, which has since been both expanded and accelerated due to a new partnership with MDA Augie's Quest.  A round-table discussion of how best to integrate the newest ALS TDI fundraising programs, Driving 4 Life and the Tri-State Trek, provided new ideas and excitement. A traditional New England lobster dinner was hosted by John & Peggy Heywood in Newton where the first Leadership Awards were presented. Read More in the ALS TDI Newsletter here.