12th Annual Leadership Summit

Friday, October 28th, 2016 @ MassBio, 300 Technology Square, Cambridge, Massachusetts

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This year's event has been changed dramatically from previous ones based on direct feedback and requests from people with ALS and supporters of our work to cure it. We will focus on what we have done over the last year and dive in deep on our two main focuses to end ALS: getting our most promising treatment for ALS, AT-1501, into the clinic and outcomes from the world's first Precision Medicine Program. Enrollment into that program will occur during the summit. In the afternoon we will have a frank conversation about the fundraising needed to advance these two programs and seek audience input to help shape our strategy to accomplish that urgent goal.

Friday, October 28, 2016

Summit Breakfast
9:30 AM
Registration
Coffee will be Served
Jośe Cofiño
10:30 AM
Welcome Message
Jośe Cofiño
Person with ALS
Steve Perrin, Ph.D., CEO & CSO
10:45 AM
What's happened in the last year at the Institute?
Steve Perrin, Ph.D.
CEO & CSO ALS Therapy Development Institute
Precision Medicine Program Panel Discussion
11:15 AM
Precision Medicine Program Panel Discussion
Steve Perrin, Ph.D., CEO & CSO

Steve Perrin, Ph.D.
CEO & CSO ALS Therapy Development Institute

Matt Bellina

Lt. Com. Matt Bellina (USN Ret.)
Person with ALS & PMP Participant

Beth Hebron

Beth Hebron
Person with ALS & PMP Participant

Jośe Cofiño

Jośe Cofiño
Person with ALS & PMP Participant

Lunch
12:00 PM
Lunch
Atrium, 100 Technology Square
Precision Medicine Program Sign-Up
12:00 PM - 6:00 PM
Precision Medicine Program Sign-Up
Members of the clinical team will be available to assist with questions on how to enroll in the Precision Medicine Program.
ALS Therapy Development Institute (Take elevators to 4th Floor, check in with reception)
Steve Perrin, Ph.D., CEO & CSO
1:15 PM
Ask Me Anything about ALS Research
Steve Perrin, Ph.D.
CEO & CSO ALS Therapy Development Institute
Leadership Awards
2:00 PM
Leadership Awards
Nominations Accepted until September 30, 2016
Afternoon Break
3:00 PM
Afternoon Break
Robert Goldstein
3:15 PM
What is it going to take to get ALS beat?
Robert Goldstein
Vice President, ALS Therapy Development Institute
Robert Goldstein
3:45PM
Fundraising Discussion
Robert Goldstein
Vice President, ALS Therapy Development Institute
Closing Message
4:30 PM
Closing Message Members of ALS Therapy Development Institute Board of Directors

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. Submit a nomination via email to summit@als.net or on our Facebook page. The deadline to submit nominations for this year's Leadership Awards is September 30, 2016.

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.

2015 Recipient

Beth Hebron

Past Recipients

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.

2015 Recipient

Bobby Forster

Past Recipients

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.

2015 Recipients

Sarah Coglianese, Maureen Ramirez and Team Godfather

Past Recipients

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.

2015 Recipients

Matt Bellina, Jay Smith

Past Recipients

2014 - Anthony Carbajal, Pat Quinn
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 28, 2016

MassBio
300 Technology Square
8th Floor
Cambridge, MA 02139
Map it!

The lunch and cocktail reception occur at 100 Technology Square, which is next door to 300 Technology Square. All buildings and rooms are wheelchair accessible. If you require assistance, please don’t hesitate to ask a member of the team!

A comment on parking: There is on-street, metered parking, as well as a parking garage located on Technology Square Drive. Parking will be validated. The garage does fill up quickly, even on a Friday, so we encourage an early arrival.

Lab Tours

To arrange a lab tour, please complete this form and note that you will be coming in for the summit. We will do our best to accommodate everyone as best as possible. Here is a link to request a tour of the Institute’s labs: Schedule a Tour

Hotels

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 29, 2016. 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

A White Coat Affair Gala

Saturday, October 29th, 2016 @ 6pm
Sheraton Boston Hotel
All proceeds go directly to research at ALS Therapy Development Institute

Purchase Tickets!

A White Coat Affair