ALS Patients and Researchers Unite in Boston for 4th Annual Leadership Summit

CAMBRIDGE, Mass. – The ALS Therapy Development Institute (ALS TDI)
announced the line-up for its upcoming, annual ALS research symposium,
part of the fourth annual ALS TDI Leadership Summit. The symposium will
take place this October 20th at the Beacon Hill Holiday Inn in Boston,
Mass. A diverse panel of scientists will provide presentations on the
development of effective treatments, or a cure, for amyotrophic lateral
sclerosis (ALS, commonly known as Lou Gehrig`s disease). After each
presentation, audience members are invited to offer comments and ask
questions regarding the research. Several of the guest speakers will
participate in a panel discussion to take place between the morning and
afternoon sessions. The entire event is being offered free of charge by

“There is a need in the ALS community for openness and
directness when it comes to describing what is done with all the monies
donated for research. Providing unbiased access to information and
researchers is one of the pillars of the ALS TDI philosophy. This
annual event provides a unique setting for patients and researchers to
connect in pursuit of a shared goal,” said John McCarty, Ph.D.,
Director of Therapeutic Investigation at ALS TDI.

The following is a list of confirmed researchers and proposed presentation topics:

  • “Our Plan, Our Progress, Your Lab,” Sean Scott, President, ALS TDI, Cambridge, Mass.;

  • “The
    MDA Commitment,” Sharon Hesterlee, Ph.D., Vice President fo
    Translational Research, Muscular Dystrophy Association, Tucson, Ariz.;

  • “Towards
    defining the molecular basis of ALS: clues from TDP-43,” Michael J.
    Strong, M.D., Co-Chair, Department of Clinical Neurological Sciences,
    Arthur J. Hudson Chair in ALS Research, London Health Sciences Centre,
    London, Ontario, Canada;

  • “Development of an immunotherapy for ALS,” Jean-Pierre Julien, Ph.D., Professor, Laval University, Quebec, Quebec City, Canada;

  • “Developing an Aptamer Library for ALS,” G. Thomas Caltagirone, Ph.D., President & CEO, Aptagen, LLC, Jacobus, Penn.;

  • “A
    Comprehensive Approach to Communication Systems for ALS Patients and
    their Families,” Troy Jurgenson, Co-Founder, Speak Up ALS, Coronadel
    Mar, Calif.;

  • “The Genomic and Proteomic Approach to ALS Research,” Steve Perrin, Ph.D., Chief Scientific Officer, ALS TDI;

  • “Information Resources for ALS Patients and Researchers,” John McCarty, Ph.D., Director of Therapeutic Investigation, ALS TDI;

  • “The
    Role of Inflammation in ALS,” Stan Appel, M.D., Co-Founder &
    Co-Director, Methodist Neurological Institute, Houston, Texas.

ALS TDI Leadership Summit is a two-day event aimed at providing a forum
for the exploration of the past, present and future of research into an
effective treatment for ALS. The event is designed to provide a forum
for open discussions between researchers, patients and their families.
The first day of the event consists of guided tours of the 16,000
square-foot translational research facility in Cambridge, Mass., where
the bulk of the Institute`s research team is located. There are 30
scientists and technicians that work full-time at the Institute, the
largest of its kind, focused exclusively on developing an effective
treatment and cure for ALS. This event is made possible in part through
a fundraising partnership between ALS TDI, MDA, and its Augie`s Quest
initiative. The historic, three-year, $36 million funding agreement
began at the start of 2007 and has played an intricate role in the
expansion and acceleration of research efforts at ALS TDI and elsewhere.

Research Symposium takes place between 8:00am and 5:00pm at the Beacon
Hill Holiday Inn, and will be followed by a dinner hosted by the
scientific staff of ALS TDI. At the end of the Summit, four awards will
be presented to members of the ALS community that have contributed in
significant ways to furthering ALS research and being advocates in
their community. To attend this free day-long event, pre-registration
is available online at or by calling Vanessa
Plant at 617-441-7230.

About the ALS Therapy Development Institute

ALS Therapy Development Institute (ALS TDI) (, based in
Cambridge, Mass., operates the world`s largest research and development
program focused exclusively on ALS. The Institute has a staff of more
than 30 scientists and research technicians, working on behalf of ALS
patients to discover and advance novel therapeutics for treating, and
ultimately curing, ALS. The nonprofit biotechnology institute excels in
identifying novel disease targets, discovering compounds that may act
against these targets, and screening potential treatments for clinical

About Augie`s Quest

Fitness pioneer Augie
Nieto started Augie`s Quest ( in conjunction with
MDA`s ALS Division. Nieto is co-founder and former president of Life
Fitness of Chicago, and chairman of Octane Fitness. He and his wife,
Lynne, serve as co-chairpersons of MDA`s ALS Division. Nieto received a
diagnosis of ALS in March 2005.

About MDA

( is the world`s largest provider of ALS services and
funder of ALS research. Over the years, it has expended $230 million in
this effort. It operated 225 clinics across the county, 38 of which are
ALS-specific research and care centers.

Media Contact:

Robert Goldstein



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