15th Annual Leadership Summit

Friday, November 8th, 2019
Renaissance Boston Waterfront Hotel

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Online registration for the leadership summit is now closed. You can register day-of at the Renaissance Boston Waterfront Hotel from 8:30 AM

Click to watch past year
presentation videos

Click here to watch past
award videos



The Leadership Summit returns in 2019 with a focus on progress in the discovery and development of effective treatments for ALS. Based on feedback from prior events, the Summit will provide attendees with a more in-depth look at the science happening at the ALS Therapy Development Institute (ALS TDI) today. This will include updates on preclinical drug screening occurring in models of ALS, the identification of potential biomarkers of disease progression, the development of potential new clinical trial endpoints and the advancement of promising treatments into and through trials in people with ALS.

Named for the people who have inspired our work, supported our mission, and fueled our spirit, the Leadership Awards honor those who lead us in the battle against ALS. Awards are presented at the Leadership Summit.

While these awards are given by ALS TDI, they are given truly on behalf of the ALS community. All those to be recognized are nominated by the community itself. Each recipient exemplifies in their own way the many different ways in which members of the ALS community show leadership. For more information about each of the four awards, and past recipients, see below.

Nomination Process:

The ALS Therapy Development Institute is calling upon all in the ALS community to nominate individuals for this year's Leadership Awards!!!

Nominations can be emailed to summit@als.net, posted on our Facebook page or done through any member of the ALS TDI staff. Please include their name, current city and state, the award you are nominating them for, and roughly 100 words about why they are being nominated for that award. All nominations must be made by October 6, 2018 at 5:30pm ET. A committee of internal staff and scientists review all nominations, culminating in final selections.

Fran Delaney Challenge & Respect Award

This award is presented to a member of the ALS community who has shown true leadership within their community. The recipient of this award continually questions the science and research surrounding ALS and helps drive new initiatives to battle this disease. They challenge their community to take up the fight against ALS and help share the mission of ALS Therapy Development Institute. Through their involvement in fundraising and awareness events, this person demonstrates strong leadership in their community.

Past Recipients

2018 - Jeff Swick & PHAALS Foundation
2017 - Rick Marks
2016 - Gosnell Family
2015 - Beth Hebron
2014 - Deb Quinn
2013 - Andy Rubenstein
2012 - Dr. Theresa Stephan Hains
2011 - Thomas Ohlson
2010 - Tim LaFollette
2009 - Michael Goldsmith
2008 - Emily Stoddard
2007 - Dave Virden, Jr.
2006 - General Tom Mikolajcik
2005 - Faye Magneson

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Mary Lou Krauseneck Courage & Love Award

This award is presented to a member of the ALS community who has created a foundation of hope by maintaining a passion for live despite all obstacles. The recipient of this award inspires their community to fight alongside them in the battle against ALS. They understand the importance of keeping a positive attitude and remains committed to finding a cure. This person is a model of strength, courage, and love in their community.

Past Recipients

2018 - Chris Curtin
2017 - Collin & Emily Hadley
2016 - Rusty Perry
2015 - Bobby Forster
2014 - Steve & Hope Dezember
2013 - Jenny Gore Dwyer
2012 - Reverence Bill Hassel
2011 - Megan Mishork (posthumously)
2010 - Carla Zilbersmith
2009 - Michele Dupree
2008 - Carmen Hoyo, Pam Callahan
2007 - Darryl Goss, Robin Dorogusker
2006 - Shannon McLaughlin
2005 - Amy Whipple

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Stephen Milne Adventurous Spirit Award

This award is presented to a member of the ALS community who strives to creatively combat ALS within their own community by searching for innovative ways to fundraise. The recipient of this award consistently and bravely explores new ground in fighting the disease and raising awareness. A commitment to excellence and ALS advocacy drives this person as they inspire their community to support the mission of ALS Therapy Development Institute.

Past Recipients

2018 - Patty Haberstroh
2017 - Michael "Boomer" Wallace
2016 - Smith & Hanses Families
2015 - Sarah Coglianese, Maureen Ramirez and Team Godfather
2014 - Stephen Finger
2013 - Rich Cochran & Roger Petrone
2012 - Eric Engdahl
2011 - Sharon Isles
2010 - Eric Valor
2009 - CarolAnn Garrett
2008 - Mickey Butts
2007 - Jeff Repetto
2006 - Dick Sanderson, Brian Stanfield
2005 - Steve Lewis

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Stephen Heywood Patients Today Award

This award is presented to a member of the ALS community who has proven to be a strong advocate for research and awareness. They consistently stay abreast of current research trends both in the US and abroad. This person challenges their community to collectively fight this disease while serving as an educator for those unfamiliar with ALS. They challenge ALS research institutions to focus on patients today in the hopes of accelerating a treatment and cure. They serve as a role model for patients today to find strength and determination to fight this disease each and every day.

Past Recipients

2018 - Cory Burell
2017 - Osiel & Bella Mendoza
2016 - Andrea Lytle Peet
2015 - Matt Bellina, Jay Smith
2013 - Kevin Swan
2012 - Peter Frates, Rob Tison (posthumously)
2011 - Frank Provost
2010 - Steve Saling
2009 - Corey Reich
2008 - Ken Patterson
2007 - Scott Stafne
2006 - Jon Blais
2005 - Joe Shambo, Matt Dowd

View videos

Thursday, November 7, 2019

Lab Tours

Want to see the science happening? Come into ALS TDI for a lab tour! We will be holding lab tours on Thursday, November 7 at 3 p.m. A member of the ALS TDI will give you an intimate look into the inner workings of the research happening today toward the discovery and development of effective treatments for ALS. The tour will start with a brief overview of ALS TDI in a conference room followed by a tour of the labs at ALS TDI. The entire experience lasts approximately 90mins. ALS TDI is entirely accessible, so people with ALS are very welcome to attend lab tours.

Open House

From 5 p.m. - 7 p.m., you can come meet the ALS TDI team at the lab! Refreshments and snacks will be provided.

Email us at summit@als.net to learn more or sign up for a lab tour or the Open House. If you indicated on your summit registration that you would like to attend a lab tour, a member of our team will reach out to you to determine which time is best for you.

Friday, November 8, 2019

Renaissance Boston Waterfront Hotel
606 Congress Street
Boston, MA 02210
Map it!

The entire Summit occurs at the hotel, which is located just a short car ride from Logan International Airport, or local public transit.


There is a limited number of hotel rooms secured at the Renaissance Boston Waterfront Hotel (606 Congress Street, Boston, MA 02210). This block is being held in conjunction with our White Coat Affair gala, which will occur there on November 17, 2018. To access this room block, you must call the hotel and provide them with the code "White Coat Affair Attendees" to access the discounted rate.

Helpful Links


MT Pharma America

White Coat Affair

Saturday, November 9th, 2019 @ 6pm
Sheraton Boston Hotel
All proceeds go directly to research at ALS Therapy Development Institute

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