The ALS Therapy Development Institute (ALS TDI) is pleased to announce the recipients of the 2021 Leadership Awards. The Leadership Awards are given annually to honor those go above and beyond to lead us in the battle against ALS. The awards will be presented at the end of the 2021 ALS TDI Summit, following our updates on drug discovery at ALS TDI.

Congratulations to our 2021 Leadership Award Winners.

Fran Delaney Challenge & Respect Award
Mac and Bailey Brown

Mac and Bailey Brown have been fundraising for ALS research at ALS TDI since 2012 through their ALS “Awesome Lemonade Stand.” What started out as a small lemonade stand on the corner of their street has turned into a nationwide effort where community is formed through support and sharing. Mac has used his position as a football player at Ole Miss University to generate ALS awareness and inspire others to do the same. Bailey is Mac’s proud older sister and a behind the scenes helper to help him spread awareness and carry it through. Bailey graduated from Boston Collage where the infamous Pete Frates attended. She now lives in Chicago but that does not keep her from being present at Ole Miss games and ALS fundraising events. Their spirit, fueled by the selflessness of a family friend, Michael Brandt, who in his hardest days with ALS taught Mac and Bailey the power of giving back. They have inspired others to host their own lemonade stands and contribute their earnings to support ALS TDI. To date, they have raised over $135,000, and funds continue to increase every year.

Mary Lou Krauseneck Courage & Love Award
Patrick Liam Quinn & Katie Bauer

Patrick Liam Quinn

Pat Quinn Sr. (Big Pat) has exemplified the pinnacle of love and courage since his son, Pat Quinn, was diagnosed with ALS at the age of 30. From day one, he was Pat’s biggest fan and pledged to be alongside his son throughout his journey. Early on, they launched Quinn 4 The Win to help support Pat and countless others facing ALS. Then came August 2014, when Pat co-founded the ALS Ice Bucket Challenge with Pete Frates. Big Pat was there, in the background, as always, making it possible for his son to march in parades, conduct countless television interviews, and raise $300 million for ALS care and research across the globe. Even after we lost Pat one year ago, Big Pat has kept the fight going. He spends his days collecting and delivering equipment for local people with ALS and offering help and advice to so many who need it. He runs countless events to be sure that the funds are there for people with ALS in need, and for the research at ALS TDI. He keeps his son’s incredible spirit alive, despite facing a loss that no parent should have to bear.

Katie Bauer

Katie lost her best friend, her husband, Charlie, to ALS, in 2016. And despite that, she has become, truly, the heart of the ALS community. Being with Katie, is like getting a big hug. A lawyer, a mother, a caregiver, and a friend to all who need her. Katie has chosen to ‘celebrate’ the anniversary of Charlie’s passing, each year, by coming to the ALS lab, and treating all of us to breakfasts, and lunches, and personalized gifts, and some of the best lemon cookies you could ever imagine. Katie not only rides the Tri-State Trek, but also jumps in, at the last minute, when she’s needed, into a 24-hour run through the back woods of New Jersey through Ragnar for Research. This year she is also representing ALS TDI at the TCS New York City Marathon! Her poignant blogs allow the entire community into the life of, and after ALS. She is the pinnacle of Love and Courage.

Stephen Milne Adventurous Spirit Award
Teresa Thurtle

Teresa Thurtle has one heck of an Adventurous Spirit and inspires the entire ALS community with it! Teresa has traveled the globe spreading ALS awareness on all 7 continents. An Air Force veteran and professor, Teresa spends whatever spare time she has jumping into programs like Ragnar for Research and the Tri-State Trek to help end this disease. Even with little time to train, and a bunch of injuries, Teresa’s adventurous spirit lead her to TWO runs, just weeks apart, in New Jersey and Texas this year….bears and all! Teresa comes from a familial ALS family, having lost her father and grandmother to this disease. And, beyond all of her physically adventurous efforts to help fund research, she is also the founder of Bottoms Up to Down ALS, a Young Faces of ALS ambassador, and has helped us bring new brewers into the Ales for ALS program.

Stephen Heywood Patients Today Award
Rahul Desikan M.D., Ph.D., and David & Scott Lloyd

David & Scott Lloyd

David and Scott Lloyd took a few powerful engines, created Racing for ALS, and have not stopped helping accelerate ALS research ever since! It all started with a simple live video on Facebook, showing them picking up their dream car in Texas and driving it home to North Carolina. David and Scott thought “Let's see if anyone will make donations to research while we drive this beast home,” planting the seed for what would become Racing for ALS. The Lloyd brothers have been able to engage so many different communities to learn more about ALS and the importance of research at ALS TDI. In 2018, they put together the first Dave’s Race event in just a few short weeks, despite never having hosted an event like it before, and were able to raise just under $40,000! They have now grown the Racing for ALS program to over $250,000 raised and generated a lot of awareness as they continue to build their brand. David has inspired hundreds of drivers to take on our cause due to his unwavering faith in the science at ALS TDI. Racing For ALS continues to be active through social media, news outlets, and print media to engage and support ALS patients through their love and experiences for racing.

Rahul Desikan M.D., Ph.D.

Rahul was diagnosed with bulbar-onset amyotrophic lateral sclerosis (ALS) in February 2017 and passed away from complications due to ALS on July 14, 2019. In the span of two years, Rahul developed a research program focused on the genetic architecture of ALS, became an influencer on Twitter gaining more than a thousand followers while raising awareness of ALS. Rahul was drawn to neuroscience at an early age and devoted his scientific career to studying pathology and genetic etiology of neurodegenerative diseases. In 2017, Rahul had been studying the polygenic architecture of ALS when he himself unimaginably received a diagnosis of ALS. Rahul’s disease was relentless. Within 4 months of his diagnosis, he was unable to walk, use his hands or speak. He relied on his wheelchair for mobility and used a hands-free speech device that was linked to his computer to communicate. As devastating as it was for Rahul to receive this diagnosis, he did not let it govern his life. Despite his severe disabilities, Rahul worked tirelessly until the day he died.

“Funnily enough, I started doing ALS research one month before my symptoms began, because I felt that ALS was a poorly understood disease. Once my symptoms started, I gave up, despite having made considerable progress, because I was so freaked out that I had ALS. The irony was too much to bear…Now I have made my peace with this disease and really want to make a dent in ALS.”

Rahul set a high bar with his record of scientific accomplishments and his skill in bridging science and advocacy to spur innovations in ALS research and policy. There are many words that have been used to describe Rahul including, “genius”, “brilliant”, “funny”, and “hero.” While Rahul exemplified all these qualities, his quintessential trait was his ability to connect. Rahul connected with anyone on anything, and as brilliant as he was, he also represented the everyman of ALS.

Rahul’s award will be accepted by his wife Maya and his two sons.