The ALS Therapy Development Institute (ALS TDI) is proud to announce the 2022 Leadership Award recipients: Rebecca Mourey, Lori Larson Heller, Sandra Marlowe, and Her ALS Story. These three people and one organization were chosen from dozens of nominations submitted by members of the ALS community. We are also ecstatic to share that all of the honorees, including members of Her ALS Story, will be present at this year’s ALS TDI Summit and White Coat Affair Gala.

Stephen Heywood Patients Today Award—Rebecca Mourey

This award is presented to a person with ALS who has been an exemplary community advocate for ALS research and awareness. They are knowledgeable of current research, willing to inform the community about research trends and advancements, and eager to serve as an educator for those unfamiliar with ALS. They challenge ALS researchers to remain firmly planted within the ALS community and focus on people with ALS today, in the hope of accelerating treatments and cures as quickly as possible. This person is a role model for people with ALS, encouraging them to find the strength and determination to fight this disease through research every day.

Rebecca Mourey:
Rebecca “Becky” Mourey was diagnosed with ALS in November of 2020. From the moment of her diagnosis, she channeled her natural strength and determination into becoming an eloquent and indomitable advocate for the ALS community. Nearly two years after diagnosis, wheelchair-bound and requiring a Tobii to communicate, she continues to live her life by the following tenet: "Now, and for the rest of my life, my absolute focus is to do everything in my power to help change the trajectory of this disease from 100% fatal to treatable."

Becky worked with MGH, I AM ALS, ALS ONE, and countless politicians during the passing of ACT for ALS. After December of 2021, her advocacy work continued, with a focus on getting ALS patients access to the promising drug AMX0035.

Today, Becky continues to fight. Even when she feels sick or needs extra help, she continues to demonstrate to the world that an ALS-ridden body is not a useless body. She has shown tremendous resilience, always putting the good of the greater ALS community before her immediate comfort. She is a force multiplier. Her selfless actions have triggered a chain reaction of compassion, courage, and strength, pushing the needs of the ALS community to the forefront of ALS research.

Stephen Milne Adventurous Spirit Award—Her ALS Story

This award is presented to a member of the ALS community who strives to find new and innovative ways to fundraise, advocate, and raise awareness for ALS research. The recipient of this award constantly explores bold new approaches to engage others in the fight to end ALS. They are driven by a commitment to excellence in ALS advocacy as they inspire their community to support the mission of the ALS Therapy Development Institute.

Her ALS Story:
For the first time in the history of these awards, ALS TDI is honoring a group – Her ALS Story. Her ALS Story is a group of 32 women, all diagnosed with ALS before their 35th birthday. Their mission is to challenge the stereotype that ALS only affects older, mostly white, men. The women of Her ALS Story have fostered a candid dialogue about their declining health in female-centric media outlets, cultivated relationships with women lawmakers to improve insurance and Medicare standards for people with ALS, and introduced legislation to speed up the ALS drug pipeline.

They have also raised money to support the pursuit of unbiased ALS research to ultimately end this devastating disease. We are constantly inspired by the work of these women, many of whom have individually received nominations for leadership awards themselves, and we know their efforts will help change the trajectory of ALS.

Mary Lou Krauseneck Courage & Love Award—Sandra Marlowe

This award is presented to a member of the ALS community who demonstrates unwavering courage and optimism. The recipient of this award selflessly leads by example to uplift and inspire those around them. They believe in the power of positivity and remain committed to finding treatments for ALS. This individual consistently serves as a model of strength, courage, and love in the ALS community.

Sandra Marlowe:
Sandra Marlowe is a mother, grandmother and, like ALS TDI’s CEO Dr. Fernando Vieira, a Florida Gator (Go Gators!). She and her husband Wayne have been married for 45 years. They have five children and 13 grandchildren.

The Marlowes are a close-knit family who love spending time together and going on travel adventures. Prior to her diagnosis, Sandra maintained an active lifestyle of recreational biking, hiking, walking, and competitive swimming with US Masters Swimming. In 2019, Sandra experienced an unusual choking episode at a family Thanksgiving dinner. Just a few months later, in March of 2020, she was diagnosed with bulbar ALS.

If you haven’t met Sandra Marlowe in real life, you have very likely interacted with her on Twitter. Every day her unwavering positivity is an inspiration to many as she navigates the “new normal” of living with ALS. Sandra's active Twitter and Facebook feeds have always shown her incredible attitude and heart. She always provides great examples of the hardships of living with ALS while also demonstrating hope and positivity.

“As symptoms progress, many people living with ALS become homebound,” Sandra says. “Out of sight, out of mind. The public have no idea of our struggles. I live next to a park with a walking trail. I get stares, and smiles. I can't speak, but I'm a rolling ambassador.”

Fran Delaney Challenge & Respect Award—Lori Larson Heller

This award is presented to a member of the ALS community who has shown true leadership by engaging the community to advocate for and accelerate research. Through involvement in fundraising and awareness events, this person demonstrates a unique ability to organize and inspire others to help end ALS. They challenge those around them to join the fight against ALS, and actively spread awareness of the ALS Therapy Development Institute’s work and mission.

Lori Larson Heller:
On September 6th, 2018, Lori Larson Heller’s life changed forever when her beloved husband, Jim, was diagnosed with ALS. Lori and Jim were both commercial real estate executives. Despite her robust career, Lori made the decision that fateful day to leave her job and become Jim’s full-time caregiver. It was just a year and a half later that Jim passed away.

Despite her loss, Lori chose to dedicate her life to changing the future of ALS for others. Her goal is to ensure that a cure is found in her lifetime. She connected with almost every ALS organization and advocate she could to identify opportunities to get involved. For the past two years, Lori has been a tireless advocate for ALS research and ALS TDI. She generously provided the funding to establish the Jim Heller Mouse Investigation Room at ALS TDI, while visiting clinics to educate staff on the Precision Medicine Program. In her little free time, Lori has taken classes on the role of Expanded Access Programs, hosted fundraisers, and supported many people living with ALS with her warmth and kindness.

What to Do Next:

  • To see past Leadership Award Winners, click here.
  • Register for the ALS TDI Summit virtually or in-person to see the award presentations here.