ALS Research, Biomarkers and Clinical Trial Design to be Explored at the ALS Therapy Development Institute’s 11th Annual Leadership Summit

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Uniquely styled research symposium will be held on November 13, 2015 in Boston, MA

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The ALS Therapy Development Institute announced today that it is hosting its 11th annual Leadership Summit, a research symposium on topics related to the field of amyotrophic lateral sclerosis (ALS), on Friday, November 13, 2015 at the Sheraton Boston Hotel in Boston, MA.

ALS is a complex disease and finding treatments and a cure requires close collaboration and transparency between patients, caregivers, families, physicians, researchers and drug developers. A nonprofit biotech founded by a person living with ALS and his family, the ALS Therapy Development Institute created the Leadership Summit as an annual meeting devoted to fostering that collaboration and transparency in our common goal to end ALS. The program is designed annually based on topics trending among both the patient and research community and will be webcast for those who cannot travel.

This year’s Leadership Summit will focus on three topics central to the effort to discover and develop effective treatments and cure for ALS:

  • Research: Scientists from the ALS Therapy Development Institute will provide in-depth presentations on the Institute’s preclinical and clinical research, including data from the actively enrolling Precision Medicine Program for ALS;
  • Biomarkers: Distinguished neurologists will present the effort to determine biomarkers of disease onset and progression aimed at speeding up diagnosis of ALS and clinical trials on potential treatments; and
  • Clinical Trials: People living with ALS, biostatisticians and researchers will engage one another in panel discussion on how clinical trials may be better designed to match the urgent need for ALS treatments.

The Leadership Summit will feature presentations from these distinguished speakers and panelists:

  • Steve Perrin, PhD, of the ALS Therapy Development Institute will provide an update of the research inside the world’s largest ALS research center, including an overview of completed and pending clinical trials.
  • Fernando G. Vieira, MD, of the ALS Therapy Development Institute will speak about the extensive preclinical portfolio aimed at identifying treatments for clinical development.
  • Matvey Lukashev, PhD, of the ALS Therapy Development Institute will present the scope and status of the Precision Medicine Program conducted at ALS TDI.
  • Robert Bowser, PhD, of Barrow Neurological Center and Iron Horse Diagnostics will present data on the potential use of neurofilaments as an effective diagnostic tool and potential biomarker of ALS.
  • Ajay Verma, MD, PhD, of Biogen will give the audience an inside look into how his company is working to advance potential treatments for ALS.
  • Stephen Finger, PhD, of the Darla Moore School of Business at University of South Carolina, is a person living with ALS and panelist of the afternoon session who will provide the patient perspective on the current design of ALS clinical trials.
  • David Schoenfeld, PhD, of Harvard T.H. Chan School of Public Health is one of the leading biostatisticians in the field, and he will give his impressions on the barriers and opportunities to improve clinical research during the afternoon panel devoted to the topic.
  • Jonathan Katz, MD, runs the ALS clinic at the Forbes Norris Center in San Francisco and has been involved in many different clinical trials and designs. During both panels at the Summit, he will provide insights into how, as a neurologist, he thinks about clinical trials in ALS.

Attendees have direct access to all speakers, and discussion will be lively. This event has had a direct impact on the direction of science programs at the ALS Therapy Development Institute because of the deep involvement of the patient, philanthropist and drug development communities.

In addition to the scientific discussion, there will also be an awards ceremony to recognize individuals working on behalf of the ALS community to advance awareness of ALS and research to develop treatments and a cure for the disease. The awards will be presented to US Navy Lt. Commander (Ret.) Matt Bellina from Holland, PA; Sarah Coglianese from San Francisco, CA; Bobby Forster from Newport, RI; Beth Hebron from Maplewood, NJ; Maureen Ramirez and Team Godfather Charitable Foundation from Encinitas, CA; and Jay Smith from Austin, TX.

The Leadership Summit will be held at the Sheraton Boston Hotel in Boston, MA on November 13, 2015. There is no cost to participate, and the event is open to the public. To learn more and to register for the Leadership Summit, visit

About the ALS Therapy Development Institute
The ALS Therapy Development Institute and its scientists actively discover and develop treatments for ALS. The Institute is the world’s first and largest nonprofit biotech focused 100 percent on ALS research. Led by ALS patients and their families, the charity understands the urgent need to slow and stop this horrible disease. Based in Cambridge, MA, the Institute has served as one of the leaders in sharing data and information with academic and ALS research organizations, patients and their families. For more information, visit

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