2017 Open House & Welcome Event

Friday, October 13th, 2017 @ ALS TDI
530 PM, with remarks at 630PM

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This year, ALS TDI is co-hosting two important science conferences: the Massachusetts ALS Partnership Symposium and the 28th International Symposium on ALS/MND Research.

The first of these is a one-day meeting together with MGH and UMass Medical. It will showcase work being done to advance potential gene therapy approaches to ALS and important drugs being developed to target neuro-inflammation, such as AT-1501, developed here at ALSTDI. Steve Perrin sits on the program committee and will be giving a very important talk regarding current opportunities and new directions in ALS drug development. This will be the first joint symposium, and we are grateful to be able to play a leadership role in its design. ALS TDI doesn’t control registration for this meeting, but those interested should sign up here. The meeting takes place in Cambridge on October 27.

The second meeting is the world's largest ALS/MND conference, with more than 1000 people attending a jam packed three-day series of presentations from the leading researchers in our field. Steve Perrin sits on the program committee for this important meeting as well, and will be chairing a session and giving a plenary talk about how technologies, such as the use of accelerometers, may be able to speed up clinical development in ALS. The science team at ALS TDI will also have many poster presentations on outcomes from its drug screening efforts, model development using cell based assays, and PMP data during that conference. This conference takes place in Boston between December 7-9. ALS TDI does not have control over registration, more information can be found about that here.

Hosting these meetings is a great honor for ALS TDI. They are opportunities to share our progress broadly and for us as an organization to take a leadership role more directly in driving the ALS research conversation both here in our own backyard and across the globe. Our legacy of being transparent with our progress to all in the ALS community, including patients, families and supporters alike hasn't changed. We will be hosting public webinars with the information to be presented around the meetings and taking questions as well.

The cost to host these important meetings is high, and thus, ALSTDI has chosen to forego holding its annual Leadership Summit this year in the traditional way. This decision was not made lightly, and the Leadership Summit - science presentations, panel discussions and all - will return in 2018. More information on the date of the 2018 meeting will be announced as soon as possible.

One of the most important parts of the Summit that people constantly comment about is the opportunity to meet other like-minded individuals living with ALS and dedicated to raising money for research, and getting one-on-one time with the scientists of ALS TDI. We don't want people with ALS and supporters of ALS TDI to lose that opportunities entirely while we put the traditional full day of science presentations that has typically made up the Summit on hold!

Therefore, ALS TDI invites all to attend a special open house and welcome cocktail party with a “state of ALS TDI research” talk from Steve Perrin on October 13, 2017 at ALS TDI, the night before our White Coat Affair gala.

Is there a cost to attend?

We have never charged for our Summit or to visit our labs and talk to our scientists. This is open to the public and free of charge, but given the size of ALS TDI, space may become limited so early registration is encouraged.

Can people with ALS attend?

Yes! That is who we work for after all. ALS TDI is an accessible location and people with ALS are encouraged to join. When you register, please note if you need assistance or special arrangements.

What's the Schedule Look Like for the Open House?

Cocktails and appetizers will be provided starting at 5:30pm. Steve will speak around 6:30pm. The event will conclude around 8:00pm.


As it is tradition that the Leadership Summit be webcast live and more information about how to view his talk during the Open House remotely will be forthcoming.

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 13, 2017 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

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

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

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

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

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Friday, October 13, 2017

ALS Therapy Development Institute
300 Technology Square
4th Floor
Cambridge, MA 02139
Map it!

The Open House and Welcome Event will include a reception, lab tours and remarks from our CEO, Dr. Steve Perrin. All events take place at ALS TDI. The building that we are in is accessible to those in wheelchairs and using other mobility devices. If you require assistance, don't hesitate to ask a member of the ALS TDI team!

Lab Tours

To arrange a lab tour, please complete this form and note that you will be coming in for the Open House and Welcome Event. We will do our best to accommodate everyone as best as possible on Friday the 13th before, during or after the event. Here is a link to request a tour of the Institute's labs: Schedule a Tour


There is a limited number of hotel rooms secured at the Sheraton Boston Hotel (39 Dalton Street, Boston, MA 02199). This block is being held in conjunction with our White Coat Affair gala, which will occur there on October 14, 2017. To access this room block, you must call the hotel and provide them with the code “WCA Attendees” to access the discounted rate. Attendees should plan to make their own transportation arrangements to and from the hotel.

Helpful Links


White Coat Affair

Saturday, October 14th, 2017 @ 6pm
Sheraton Boston Hotel
All proceeds go directly to research at ALS Therapy Development Institute

Purchase Tickets!