2025 ALS TDI Leadership Award Winners 

The ALS Therapy Development Institute (ALS TDI) Leadership Awards are presented to people who have been nominated by our community in recognition of their exemplary leadership in the fight against ALS.  

ALS TDI is proud to announce the 2025 Leadership Award recipients: Will and Lincoln Bennett, Louis Del Re, Gary & Carol Godfrey, Katie DeGregorio Silvestri, Mindy Uhrlaub, Timm Fenton, Janie Gobeli, and Lynn Brielmaier. We are thrilled to share that many of the honorees will be present at this year’s ALS TDI Summit and White Coat Affair Gala.

You can read the descriptions of the awards and see the past award winners here. 

2025 Leadership Award Winner List

Alexander Heywood Award 

Lincoln and Will Bennett

Lincoln (9) and Will (7) Bennett have shown remarkable compassion and determination well beyond their years. After their mom Sara’s diagnosis with ALS in 2023, the brothers decided to channel their energy into helping find a cure. Instead of asking for birthday presents, they requested donations for ALS research. They even asked for practical tools to help build a lemonade stand to support their cause. 

Through their creativity, generosity, and heartfelt efforts, Lincoln and Will have raised more than $3,500 for ALS research. Their actions embody the spirit of hope and advocacy, showing that even the youngest voices can make a powerful impact in the fight against ALS. 


Fran Delaney Challenge & Respect Award

Mindy Uhrlaub

We are proud to present the Fran Delaney Challenge and Respect Award to Mindy Uhrlaub, whose leadership and activism have made a profound impact on the ALS community. As a carrier of the C9orf72 gene, Mindy has transformed her personal journey into a powerful force for change, becoming a tireless advocate for genetic carriers of ALS. She is a founding member of Genetic ALS/FTD: End the Legacy, a peer mentor with I AM ALS, and a dedicated participant in more than a dozen longitudinal studies, helping to advance research with every step. 

Her memoir, Last Nerve: A Memoir of Illness and the Endurance of Family, has inspired countless individuals by turning fear into advocacy and action. Most recently, she was nominated to serve on a committee of the National Academy of Sciences, Engineering, and Medicine, where she contributed to a landmark report on how to make ALS a livable disease. Through her advocacy, writing, and leadership, Mindy embodies the spirit of this award by uniting and inspiring others to accelerate research and fight for a future without ALS.


Mary Lou Krauseneck Courage & Love Award

Gary and Carol Godfrey 

In 2019, Gary Godfrey, a former Auburn University basketball player, was diagnosed with ALS. Since then, he and his wife, Carol, have faced each day with remarkable courage and unwavering optimism. They embody their personal mantra: “Make Today Your Best Day.” 

Gary and Carol have become pillars of hope for individuals newly diagnosed with ALS throughout Georgia and Alabama. Beyond offering emotional support, they are dedicated advocates, raising both awareness and vital funds for ALS care and research through various initiatives. 

One of their efforts is the Kerry and Gary Challenge, which has united Auburn and Alabama fan bases in the fight against ALS. This challenge is the brainchild of Gary and Kerry Goode, a beloved University of Alabama football player and fellow pALS. Leveraging the widespread enthusiasm surrounding the Iron Bowl rivalry, the challenge has raised over $300,000 since its launch in 2022—funds that go directly toward essential care services in the region. 

In 2024, they expanded their efforts by launching a fundraising campaign for ALS research. Inspired by the success of Ales for ALS and their love of Auburn football, they hosted a VIP tasting event before an Auburn game that raised nearly $80,000 in its inaugural year. Due to its success, the event is returning this year, with even greater goals. 

Above all, Carol and Gary are known for their deep kindness, empathy, and sincere care for everyone they encounter. Their tireless commitment to finding a cure for ALS continues to inspire all who meet them. 

 

Katie Degrigorio Silvestri 

In December 2023, at the age of 34 and just three months after the birth of her daughter, Katie DeGregorio Silvestri was diagnosed with ALS. As a Nurse Practitioner, she dedicated her life to helping others in their greatest needs—in Emergency Departments, Children’s Hospital and Cancer Center Intensive Care Units, and the community with patients during housing and mental health challenges. She is also a loving mother, wife, daughter, sister, and best friend to so many. A testament to the impact she’s had on others, Katie’s community rallied around her after her diagnosis and continues to support her care and various ALS nonprofits through “Katie’s Cure.” You’d be hard-pressed to visit Falmouth, MA without seeing someone sporting a “Katie’s Cure” t-shirt or hat. 

 In May, ALS Awareness Month, Katie rallied her community of friends, family, and supporters and reinvigorated the Ice Bucket Challenge for ALS. What started as a small Instagram fundraiser ended up raising over $30,000 for critical ALS research at ALS TDI. Katie is a proud member of the Her ALS Story (HAS) group. When she learned a fellow HAS group member’s dream vacation may have to be canceled last minute due to a caregiver unable to attend, Katie generously and selflessly offered up her own caregiver so her friend could make the trip. Katie is described by her friends and family as selfless, kind-hearted, and a fighter. 


Stephen Milne Adventurous Spirit Award 

Timm Fenton

Timm Fenton was a man on a mission.  After losing his mom, Jan, to ALS in 2017, Timm knew he needed to try to make a difference in ending ALS.  So, he decided to fulfill a lifelong dream of riding his bicycle across the country, that’s when Pedals Vs ALS was born.  Timm’s incredible journey started with his rear wheel in the Pacific Ocean in Florence, Oregon on May 1st.  913 miles and 45,686 ft in elevation and 14 day later, he made it to Missoula, MT, where he was hosted for a fundraiser by a local man living with ALS.  Then off for the rest of his epic journey, which took him a total of over 4,200 miles in 67 days to reach Yorktown, Virginia, finally seeing his front wheel touching the Atlantic Ocean.  In between those states, Timm saw incredible landscapes, giant mountain ranges he climbed in the snow! Meeting families that had been affected by ALS.  Wild dogs that charged at his bike! Haunted church basements with signs that said, “Watch out for the Brown Recluse Spider!”  But all the while, he kept saying none of this is ALS! This year, the Stephen Milne Adventurous Spirit Award is certainly well deserved.  


Stephen Heywood Patients Today Award

Lynn Brielmaier

 

An electronics engineer who has worked in the oil industry and computer manufacturing, Lynn was diagnosed with ALS in 2019.  Despite the relentlessness of the disease, Lynn called upon his fortitude, and his experience to question, encourage, and push the ALS research community forward.  Lynn has served as a Patient Fellow to the ALS /MND Symposium, serves as an active member of the ALS Problem Solvers, has designed and built a custom eye gaze computer, and has collaborated with the ALS TDI ARC team to expand the program’s blood collection capabilities.

Lynn, also, informally serves as a source of truth and knowledge across social media platforms.  He is active in the well-known and highly regarded ALS Clinical Trials and Research Group on Facebook, where Lynn challenges research and reports out a patient perspective that is informative for the whole community. 

Lynn truly embodies the tenets of the Stephen Heywood Patients Today Award.


Janie GobeliDiagnosed with ALS in 2021, Janie Gobeli has become an extraordinary voice and advocate for the ALS community. She has served as an ALS Research Ambassador for NEALS, a member of the Les Turner ALS Foundation’s Support Services Committee, and an Advisory Committee Member for the Healey ALS Platform Trial. Janie’s dedication extends across multiple advisory boards for clinical trials and research, where she ensures that the voices and needs of people with ALS remain at the center of progress. She is known not only for her advocacy and expertise but also for the encouragement and hope she brings to others navigating this disease. 

Janie embodies the spirit of this award by championing research, sharing knowledge, and inspiring people with ALS to continue the fight with strength and determination. 


Augie Nieto Legacy Award - New in 2025!

Louis Del Re 

Louis Del Re is a shining example of true leadership and collaboration in raising awareness and funds to accelerate research for a cure for ALS. Since his diagnosis at the age of 30 in June 2023, he has lived by the mantra ‘Keep On Buzzin’—a reminder to stay motivated, embrace joy, practice gratitude, and keep fighting. Louis, a Toronto, Canada native, joined the Board of Directors of ALS Action Canada. After learning about ALS TDI’s Ales for ALS program, Louis proposed an idea– let’s combine forces and establish a partnership between Ales for ALS and the ALS Superfund to create a more impactful and scalable way to spread the initiative across Canada. In just a few short months, the partnership was in place and Louis personally recruited 8 brewers in Ontario. Louis consistently communicates that the ALS community is stronger when working together, no matter where we are. When it comes to ending ALS, we are all on the same team. 

 Louis uses his social media platforms and speaking opportunities to educate others on what it’s like living with ALS and amplifies the patient and caregiver voices of others. Louis shares his personal story and challenges in authentic and vulnerable ways that are a testament to his strength and values. It is not only what Louis has helped achieve in terms of building partnerships, raising awareness, and driving forward common goals to end ALS, it’s how he’s done it. His inclusivity, collaboration, kindness, humor, humility, and incredible wisdom touch every person he meets. Louis sets a truly outstanding example of how influential and impactful any one person can be for a cause. 

 

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