Leadership Summit Videos

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.

The Gosnell Family was the recipient of the Fran Delaney Challenge & Respect award, given at the ALS Therapy Development Institute's 12th annual Leadership Summit.

Rusty Perry was the recipient of the Mary Lou Krauseneck Courage & Love award, given at the ALS Therapy Development Institute's 12th annual Leadership Summit.

The Smith & Hanses Families were the recipients of the Stephen Milne Adventurous Spirit award, given at the ALS Therapy Development Institute's 12th annual Leadership Summit.

Andrea Lytle Peet was the recipient of the Stephen Heywood Patients Today award, given at the ALS Therapy Development Institute's 12th annual Leadership Summit.

Beth Hebron of Maplewood, NJ was the recipient of the Fran Delaney Challenge & Respect award, given at the ALS Therapy Development Institute's 11th annual Leadership Summit.

Bobby Forster of Newport, RI was the recipient of the Mary Lou Krauseneck Courage & Love award, given at the ALS Therapy Development Institute's 11th annual Leadership Summit.

Sarah Coglianese of San Francisco, CA was the recipient of the Stephen Milne Adventurous Spirit award, given at the ALS Therapy Development Institute's 11th annual Leadership Summit.

Team Godfather of Encinitas, CA was the recipient of the Stephen Milne Adventurous Spirit award, given at the ALS Therapy Development Institute's 11th annual Leadership Summit.

Matt Belllina of Holland, PA was the recipient of the Stephen Heywood Patients Today award, given at the ALS Therapy Development Institute's 11th annual Leadership Summit.

Jay Smith of Austin, TX was the recipient of the Stephen Heywood Patients Today award, given at the ALS Therapy Development Institute's 11th annual Leadership Summit.

Deb Quinn of Wellsville, NY was the recipient of the Fran Delaney Challenge & Respect award, given at the ALS Therapy Development Institute's 10th annual Leadership Summit.

"While Deb has ALS and has lost many members of her family to this terrible disease, she has dedicated herself to raising awareness at every possible turn. She keeps her fellow PALS and the entire community uplifted as she shares her ALS story with the public. She is a model of strength, courage, and love!"

Steve and Hope Dezember of Alpharetta, GA were the recipients of the Mary Lou Krauseneck Courage & Love award, given at the ALS Therapy Development Institute's 10th annual Leadership Summit.

"They have shared their battle with thousands and have created a massive extraordinary ALS family spanning this country and the world. Their ALS family is growing by the minute. They deserve recognition for enlightening so many of us to what ALS is, and how we can fight this together and beat ALS for those in the future. Their courage, strength and love of life is infectious. We have ALL been touched in so many ways thanks to this wonderful couple."

Stephen Finger of Columbia, SC was the 2014 recipient of the Stephen Milne Adventurous Spirit award, given at the ALS Therapy Development Institute's 10th annual Leadership Summit.

"Stephen is a truly incredible young man who has taken on this terrible disease with goals to help others and help find a therapy that will work. From his initial diagnosis, Stephen has decided to get involved and stay involved. He inspires others with his determination and positive attitude."

Pat Quinn of Yonkers, NY was the 2014 recipient of the Stephen Heywood Patients Today award, given at the ALS Therapy Development Institute's 10th annual Leadership Summit.

"Since his diagnosis, Pat made the decision to become a strong advocate for the need for research and awareness in the ALS community. Pat was a strong force behind the ALS Ice bucket challenge, which contributed to global awareness and made a difference in the ALS community. Pat is a selfless man. He did many interviews with several media outlets and encouraged people to donate to the ALS community, not his personal organization."

Anthony Carbajal of Temecula, CA was the 2014 recipient of the Stephen Heywood Patients Today award, given at the ALS Therapy Development Institute's 10th annual Leadership Summit.

"Because of Anthony taking the time to open his heart and share the truth about ALS, millions of dollars and millions of people suddenly understand the crisis that is ALS."

Jenny Gore Dwyer of Kenmore, WA was the recipient of the 2013 Mary Lou Krauseneck Courage & Love Award, given at the ALS Therapy Development Institute's 9th annual Leadership Summit.

"Jenny Dwyer has done so much for people with ALS- at the public policy level, at the personal level, and everywhere in between. Her husband, Pat, was an absolutely great guy. Jenny deserves to be recognized."

Kevin Swan of Bradenton, FL was the recipient of the 2013 Stephen Heywood Patients Today Award, given at the ALS Therapy Development Institute's 9th annual Leadership Summit.

"In the short time that Kevin has been digonosed with ALS he has helped all that know him be more knowledgable about ALS. He has taken on the mission to make everyone he can understand what ALS is. He is committed to not only awareness of ALS but also to raise funds that will go toward the research necessary to find a treatment and a cure for this very serious disease. He inspires all that know him to help him with this mission."

Rick Cochran and Roger Petrone of Greenwich, CT were the recipients of the 2013 Stephen Milne Adventurous Spirit Award, given at the ALS Therapy Development Institute's 9th annual Leadership Summit.

Roger was diagnosed in 2007, and just like on the job with the Greenwich Police Department, Rick was his partner in the battle against ALS. The two immediately got involved in the Tri-State Trek event, forming one of the largest teams- Team Greenwich Police- and rallying their community in support of ALS research.

Andy Rubenstein of Cranbury, NJ was the recipient of the 2013 Fran Delaney Challenge & Respect Award, given at the ALS Therapy Development Institute's 9th annual Leadership Summit.

"Not only does he have the ability to bring a smile to anyone's face, but Mr. Rubenstein is also one of the most humble people I know. Mr. Rubenstein lost his father to ALS, and he rides so that his children will never have to suffer the loss that he did. As Mr. Rubenstein would say, it's not about small or large donations, it's about the awareness that is spotlighted on this terrible disease. He deserves this award- it is time that we show him how appreciative we are of his bravery and his commitment to his family and friends by taking one step further in the attempt to find a cure for ALS."

Pete Frates was the 2012 recipient of the Stephen Heywood Patients Today award presented at ALS TDI's 8th annual Leadership Summit.

Pete is a 27 year-old from Beverly, MA, who was recently diagnosed with ALS. He was a Division 1 college athlete and former captain of Boston College Baseball.

Pete was recognized with this award for several reasons: Since Pete's diagnosis, he hasn't taken a minute to pity himself. Instead, he launched an advocacy campaign that's garnered the attention of national media outlets like ESPN, ABC News, and TV programs like Charlie Rose. He established the Pete Frates #3 Fund and has worked to raise awareness through events all over the country and updates on his blog. Pete is a true inspiration to everyone he meets and helps to pull everyone together for the cause.

Rob Tison was posthumously honored with the 2012 Stephen Heywood Patients Today award presented at ALS TDI's 8th annual Leadership Summit.

Rob was recognized for giving a voice to thousands nationally battling ALS. After being diagnosed with ALS on March 8, 2010, Rob focused his skills on finding a cure for the disease. He was a patient representative for the CDC National ALS Registry, ambassador for the Northeast ALS Consortium, and advocated on Capitol Hill three times for money to fund ALS research. He also could be found regularly on PatientsLikeMe.com giving advice and input on the disease with graphs to back up his analysis.

In addition, Rob left a lasting impact on the ALS community; after he passed September 2012, a Facebook page was created in honor of his advocacy for ALS (Persevering- You are a Game Changer).

Reverend Bill Hassel was the 2012 recipient of the Mary Lou Krauseneck Courage & Love award presented at ALS TDI's 8th annual Leadership Summit.

Reverend Hassel was nominated by his peers for this award and chosen for several reasons:

  • He is a 5 year ALS survivor, but from the beginning of his diagnosis, he was and is still driven to participate in awareness, fundraising and patient care.
  • He started a support group for people with ALS (PALS) in Victoria, TX. It all started with his frustration with being asked to drive from Victoria, TX to Houston, TX for a support group meeting. The trip took 2 hours each way and was just not travel friendly for an ALS patient. So undaunted, Bill started his own Support Group in Victoria, a city of 60,000 with 5 ALS cases of which one passed recently and another diagnosed. This group meets on a monthly basis and is led by Bill.
  • He was instrumental in the making of the documentary "Breadth of Hope," which was produced, directed and filmed by Drew Stewart. It is an ALS advocacy and awareness film in which the lives and challenges of living with ALS of the Victoria, TX PALS is brought to the forefront.
  • He started a family-oriented annual event named the "Stroll, Roll N Run" which has raised over $86,000 for research at ALS TDI in just 3 years. This event starts with an interfaith ecumenical ceremony followed by race. Many families in the Victoria area attend and obviously support Bill's efforts. One of the major sponsors is Nolan Ryan, president and part owner of the Texas Rangers. Nolan donates all the food for the event and Bill has made this happen.
  • Bill worked with Nolan Ryan and Drew Stewart in 2011 to create a PSA for ALS and ALS TDI which was broadcast by some of the TV stations Bill contacted before the World Series started. This year Bill has challenged himself to contact every TV station in the US to ask them to run the PSA.
  • He introduced ALS TDI to Sophia Smith, an incredibly successful senior executive and member of the Avon sales leadership team who was diagnosed with ALS. This introduction led to an "AVON" fundraising campaign which raised over $70,000 for research at ALS TDI.

Eric Engdahl was the 2012 recipient of the Stephen Milne Adventurous Spirit award presented at ALS TDI's 8th annual Leadership Summit.

Eric was chosen for this award for several reasons: The second he found out that his mother was diagnosed with ALS, he made it his mission to help find a cure for the disease. Although he is not a researcher, he has done as much fundraising as possible to help the cause, raising close to $100,000 in the past three years so that no family has to suffer what his family endured.

Additionally, he has organized and participated in numerous events to fundraise. Individually, he's fundraised by participating in activities such as running in the Boston Marathon, and in lieu of wedding favors, donating to ALS TDI. With others, he's fundraised for ALS research by organizing events like the Nantucket fishing tournament, "The Big Game Battle," and another fundraiser in Boston, "Wings over Wall Street."

Also, Eric is always helping with networking opportunities to bring ALS to the forefront.

Dr. Theresa Stephan Hains was the 2012 recipient of the Fran Delaney Challenge and Respect award presented at ALS TDI's 8th annual Leadership Summit.

Terry has an undying commitment to find a cure for ALS. Though she has been personally affected by a familiar (genetic) form of the disease -- she lost her husband, Jack, to ALS on May 4, 2010; her sister-in-law is currently battling the disease; and her children and nieces/nephews are at risk for developing ALS -- Terry has been a rock for the ALS community in her area. She has shown compassion and helpfulness toward others, supporting local residents by reaching out to them, lending equipment, sharing her experience and being a resource for them.

Terry has also been a tireless organizer of annual local events to raise money for research at ALS TDI, including "A Tri in the Buff" triathlon in July, Imagine A Cure in March, and Arts for a Cure in August. Together, these local events have helped to raise more than $21,000 for ALS research, all in the effort to one day put an end to this currently incurable disease.