ALS Therapy Development Institute Announces 12th Annual Leadership Summit to Focus on Precision Medicine Potential in ALS

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Study participants will offer perspectives and scientists will give insights into initial outcomes of the program launched following the 2014 ALS Ice Bucket Challenge.

ALS TDI

ALS Therapy Development Institute

As a collective field, we are moving faster than ever before to advance potential treatments for ALS and accelerate clinical trials. Today, there is a greater awareness of the disease than there has been in its history.

The ALS Therapy Development Institute announced the schedule of its 12th annual Leadership Summit to be held October 28, 2016 at MassBio in Cambridge, MA. The event is free and open to the public and will feature in-depth looks at the Institute’s lead candidate program, AT-1501, a panel discussion with participants in its Precision Medicine Program and a community-nominated presentation of Leadership Awards.

“As a collective field, we are moving faster than ever before to advance potential treatments for ALS and accelerate clinical trials. Today, there is a greater awareness of the disease than there has been in its history. This year’s Summit will be very different from those in the past as a result of this momentum,” said Steve Perrin, Ph.D., CEO and CSO of the ALS Therapy Development Institute.

The Leadership Summit is free and open to the public. Advance registration is required online at http://www.als.net/summit.

The ALS Therapy Development Institute is actively enrolling participants in the Precision Medicine Program, a program that has resulted in the world’s largest, patient-linked database integrating ALS genetics, voice recordings, lifestyle, demographics and accelerometer data. Simultaneously, the Institute also creates induced pluripotent (iPS) cell lines from Program participant samples which are used in crucial phenotypic screening and drug discovery efforts in support of its mission to find effective treatments for ALS.

The program will be discussed at length at the Leadership Summit including perspectives from three research study participants: Matt Bellina (Lt. Cmdr., USN Ret), José Cofiño and Beth Hebron.

In addition, the Institute will present its annual Leadership Awards. Nominations are made by the ALS community via Facebook and other means. This year’s recipients are:

  • Gosnell Family of Hanover, Massachusetts – Fran Delany Challenge & Respect Award
  • Ernest (Rusty) Perry of Dallas, Texas – Mary Lou Krauseneck Courage & Love Award
  • Smith/Hanses Family of Yakima, Washington – Stephen Milne Adventurous Spirit Award
  • Andrea Lytle Peet of Raleigh, North Carolina – Stephen Heywood Patients Today Award

Last year’s recipients include Matt Bellina, Sarah Coglianese, Bobby Forster, Beth Hebron, Jay Smith, and Maureen Ramirez (Team Godfather).

More information about the Leadership Summit and the Leadership Awards can be found online at http://www.als.net/summit.

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 people with ALS and drug development experts, 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, people with ALS and their families. For more information, visit http://www.als.net.

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Colette O'Neill
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