Champions

State-of-the-art remote-participation research seeks to understand how genetic factors linked to intense activities and lipid metabolism may increase ALS susceptibility

NEW ORLEANS, August 13, 2025— Answer ALS, in collaboration with ALS Therapy Development Institute (ALS TDI) and Augie’s Quest, today announced plans to launch Champion Insights, an ambitious research initiative designed to uncover critical genetic and metabolic mechanisms that may explain the significantly higher incidence of amyotrophic lateral sclerosis (ALS) among endurance athletes, military service members, and potentially other high-performing populations.

ALS is a devastating neurodegenerative disease with no cure, affecting more than 5,000 Americans annually, and shows a 25% higher incidence in high-performing groups like athletes and military members compared to the general population. Recent European studies highlight endurance athletes, suggesting shared genetic factors may underlie both exceptional performance and increased ALS risk. 

Champion Insights will meet this challenge head-on by using remote-participation technology to turn participants’ own homes into real-world research sites. The program will collect blood samples and clinical data from up to 500 participants, eliminating logistical and geographic barriers and greatly expanding who can take part in ALS research. Former NFL athlete Steve Gleason, founder of Answer ALS and Team Gleason, which provides critical equipment and services to the ALS community, will be the first to participate, remotely giving a blood sample to officially launch the initiative.

“Understanding ALS requires fundamentally rethinking how research is done,” Gleason explained. “By empowering people to conveniently participate from home, Champion Insights can hopefully unravel why elite athletes and high performers are disproportionately impacted. It’s precisely the kind of science we can’t afford to overlook. I’m giving my blood and self to be participant #1, but because I ordinarily prefer #37, I’m challenging 36 more former athletes, military members, and adrenaline-driven humans with ALS to join me.”

Fernando Vieira, M.D., CEO and CSO, of ALS TDI, highlighted Champion Insights’ transformative potential: 

“To solve ALS, research must prioritize the specific genetic and metabolic pathways that distinguish certain populations. Champion Insights does exactly this,” said Vieira. “By allowing higher-risk groups such as elite athletes and military personnel to participate remotely, we can rapidly generate actionable data on lipid metabolism, genetics, and ALS. This innovative approach will meaningfully accelerate therapeutic discovery.”

“Augie Nieto believed the most meaningful progress starts with motivation and passion,” said Shannon K. Shryne, President and Co-Founder of Augie’s Quest. “As both an athlete and a visionary in the fitness world, he pushed for approaches that challenged convention and aimed higher. Champion Insights reflects that spirit — targeting the deeper biological patterns that may explain ALS risk in communities like the one Augie belonged to. Our mission is to make sure bold ideas like this have the support they need to go the distance.”

Champion Insights integrates seamlessly with Answer ALS’s Neuromine Data Portal — the world’s largest openly accessible ALS research repository — adding critical new layers of biological, clinical, and genetic data to drive global ALS research collaboration.

Clare Durrett, Managing Director of Answer ALS, highlighted the strategic importance of this comprehensive approach:

“The mysteries of ALS will only be answered by asking precisely the right questions, to precisely the right populations,” said Durrett. “Champion Insights brings together advanced genomic science, detailed natural history, and a wide array of omics, combined with seamless remote-participation technology, into a single, streamlined initiative. This accelerates our ability to understand and ultimately disrupt the mechanisms behind ALS.”

“As an aviator, we trained to operate at our best, physically, mentally, and professionally. That relentless pursuit of excellence is something we take pride in. Now, science is beginning to uncover that some of the same traits that drive high performers, whether in the military, athletics, or beyond, may also be linked to increased ALS risk. That’s why Champion Insights is so important. It can help us explore the ‘why’ to unlock answers. We owe it to every warrior, competitor, and teammate impacted by ALS to keep searching,” said Matt Bellina, retired U.S. Navy Lieutenant Commander and person living with ALS.

The anticipated start date for recruiting participants will be late November 2025. High-performance athletes and military service members diagnosed with ALS who are interested in participating or learning more about Champion Insights can visit ChampionInsights.org. Other populations determined to exhibit a higher incidence will be considered for inclusion.

About Answer ALS

Answer ALS is the most comprehensive ALS research consortium in history, producing more ALS data and biological samples than has ever been amassed, while openly sharing with the global research community. These data and samples are used to investigate the unique pathways of each variation of ALS and begin to develop and test the right treatments or cure. Answer ALS is an unprecedented approach to understanding and defeating the disease.
Headquartered in New Orleans and Washington, D.C., Answer ALS stands at the forefront of global efforts to eradicate the disease, supported by research partners and advocates worldwide.
For more information, visit us at answerals.org, LinkedIn, X, Facebook and Instagram. 

About ALS TDI

The ALS Therapy Development Institute (ALS TDI) is the first and largest nonprofit research institute dedicated solely to discovering and inventing effective treatments for ALS.

ALS TDI takes a multifaceted approach to ending ALS—inventing and advancing targeted treatments, identifying causes and risk factors, and cultivating a research ecosystem in which ALS drug development is effective and efficient. In its state-of-the-art labs, ALS TDI researchers drive drug discovery across multiple stages, working to advance the many therapies necessary for addressing the various types of ALS. ALSTDI.net,  LinkedIn,  X,  Facebook and Instagram. 

About Augie’s Quest

Founded by Augie Nieto, Augie’s Quest to Cure ALS is the unwavering force driving breakthroughs in ALS research, defying limitations, and empowering hope for a future without this devastating disease. We are dedicated to funding innovative research to find effective treatments and ultimately a cure, while advancing the field and translating scientific knowledge into real-world solutions. For more information, visit us at augiesquest.org,  LinkedIn,  X,  Facebook and Instagram. 

Media Contacts:

Kissy Black
Answer ALS
kblack@answerals.org

Roxan Triolo Olivas
Lotos Nile
roxan@lotosnile.com

Meghan Lawlor
ALS Therapy Development Institute

mlawlor@als.net

Shannon Shryne

Augie’s Quest

shannon@augiesquest.org

From Recon Marine to CEO to a New Battle – Tom Davin

Watertown, MA, December 13, 2024 –(PR.com)– The ALS Therapy Development Institute (ALS TDI) is proud to announce that Augie’s Quest to Cure ALS has fulfilled its $5.8 million commitment, pledged in 2021, to advance ALS research. This transformative funding has directly supported the Augie’s Quest Translational Research Center (AQTRC), a cutting-edge laboratory dedicated to developing treatments for ALS.

Over the past three years, this grant has empowered ALS TDI researchers to achieve significant progress in understanding ALS, advancing drug discovery, and bridging the gap between research and treatment. By studying cells from people with ALS, the team has uncovered key biological processes driving disease onset and progression and identified high-quality drug candidates. These efforts have brought potential therapies closer to clinical application.

“Augie’s Quest to Cure ALS has been a steadfast partner in our mission, and this generous contribution exemplifies their dedication to finding treatments,” said Dr. Fernando Vieira, CEO and CSO of ALS TDI. “Thanks to their support, the Augie’s Quest Translational Research Center continues to lead the charge in bridging scientific discovery and meaningful therapies.”

The AQTRC has advanced innovative approaches to ALS research, including identifying drug targets for ALS like PRMTs, pioneering mRNA technology, and using genome sequencing to evaluate genetic variants which may lead to personalized treatments. Through iPSC models, researchers are conducting high-throughput and high-content drug screening to rapidly test and optimize therapies. Data from ALS TDI’s ARC Study has also been utilized to identify possible blood-based biomarkers, offering new insights into disease progression and treatment effectiveness.

“We are incredibly grateful for the supporters of Augie’s Quest, whose generosity has empowered ALS TDI to lead pioneering research in honor of Augie’s vision,” said Lynne Nieto, Chair of ALS TDI’s Board and leader of Augie’s Quest to Cure ALS. “Together, we are continuing Augie’s legacy and building a future where ALS is no longer a devastating diagnosis.”

The center is named in recognition of Augie Nieto and Augie’s Quest to Cure ALS, an organization founded to support and galvanize ALS research at ALS TDI. Augie Nieto served as ALS TDI’s Chairman from 2007 until his passing in 2023. Augie’s visionary leadership and tireless efforts raised more funds for ALS research than nearly any individual in history, driving many of ALS TDI’s advancements in drug discovery.

ALS TDI extends its heartfelt gratitude to everyone who has contributed to Augie’s Quest to Cure ALS. Your support fuels hope and accelerates progress in the fight against ALS.

For more information about the Augie’s Quest Translational Research Center and its groundbreaking work, visit www.als.net/als-research/translational-research/.

About ALS Therapy Development Institute
The ALS Therapy Development Institute (ALS TDI) is the world’s most comprehensive drug discovery lab focused solely on ALS. Based in Watertown, MA, ALS TDI works relentlessly to find effective treatments and cures for ALS, partnering with organizations like Augie’s Quest to Cure ALS to accelerate progress. Learn more at www.als.net.

About Augie’s Quest to Cure ALS
Founded by Augie Nieto, Augie’s Quest to Cure ALS drives breakthroughs in ALS research, funding innovative treatments and empowering hope for a future without ALS. Augie’s Quest has been a vital partner of ALS TDI since 2006. Learn more at www.augiesquest.org.

https://athletechnews.com/mark-mastrov-fitness-industry-legend/

It was a special day for the ALS community as we joined together to celebrate the legacy of Dwight Clark on “87 Day.” Augie’s Quest to Cure ALS is honored to be part of this annual tradition that began in 2017. Thank you to the San Francisco 49ers for their dedication to our Quest to #EndALS and to all of the ALS families for joining us! #87Day

Event to support Augie’s Quest and the Life Time Foundation

CHANHASSEN, Minn., Sept. 12, 2024  /PRNewswire/ — Life Time (NYSE: LTH) today announced the nationwide launch of Life Time x Augie’s Quest GO90, a nationwide workout fundraiser to benefit both Augie’s Quest to Cure ALS and the Life Time Foundation, two organizations that focus on ALS research and patient care, and youth nutrition, movement and conservation efforts respectively.

The event will take place on Saturday, September 28, across Life Time’s athletic country clubs. Registration is open to take part and donate to the causes linked here. Those who are not members of Life Time may take part in GO90 by registering at this link and selecting the Life Time location most convenient for them.

GO90 will feature a variety of 90-minute, $25 donation class formats. Each Life Time participating will host a 90-minute marquee workout and post-event social. The length of the classes were thoughtfully chosen in recognition that someone is diagnosed with ALS roughly every 90 minutes. 100% of funds raised will be split equally among Augie’s Quest and the Life Time Foundation.

The 90-minute circuit-style workout will feature the programming of one or more of Life Time’s signature group training formats: GTX, Alpha and Ultra Fit. Depending on the club, participants can have the option to either participate in a 90-minute session of a single format or a mashup of multiple formats. There will also be a streamed class available on the complimentary Life Time Digital app for people to take anywhere.

“This event is a testament to the power of community and movement. GO90 is not just an opportunity to fund ALS research, school nutrition, youth movement and conservation efforts, but a celebration of our collective strength,” said Sarah Emola, Director of the Life Time Foundation. “Building on the momentum of our Ride of a Life Time charity cycling event in the spring, we’re excited to create another avenue for our members and communities to give back and move with purpose in the fall.”

“Every 90 minutes someone is diagnosed with ALS. We are proud to team up with Life Time and their members to raise critical funds toward our mission of driving breakthroughs in ALS research and empowering hope for a future without this fatal disease,” said Gretchen Simoneaux, Vice President of Augie’s Quest to Cure ALS. “Our founder, Augie Nieto, and Life Time’s founder, Bahram Akradi, are two icons in the industry that continue to bring us toward a healthier future.”

Augie’s Quest is dedicated to supporting ALS research and empowering hope for a future without the disease. By accelerating research, enhancing patient care and raising awareness in the fight to cure ALS. The nonprofit organization was founded by Augie Nieto, a former athlete who founded the organization in 2005 following his own diagnosis with ALS that same year. Nieto cofounded Life Fitness, the fitness equipment company, that many Life Time members are likely familiar with from using the machines in the company’s athletic country clubs.

The Life Time Foundation was established to inspire Healthy People, a Healthy Planet and a Healthy Way of Life. Beginning in 2011, the Life Time Foundation prioritized the ‘Healthy People’ aspect of its mission by supporting children’s health through youth nutrition and, more recently, youth movement programs. With an eye toward the ‘Healthy Planet’ element of its mission, the Life Time Foundation now is expanding focus on forestation and conservation efforts to help combat climate change driven by fast-rising amounts of carbon dioxide (CO₂) in the atmosphere.

For more information on GO90, visit GO90.lifetime.life. For more information on Life Time visit www.lifetime.life.

About Life Time
Life Time (NYSE: LTH) empowers people to live healthy, happy lives through its portfolio of more than 170 athletic country clubs across the United States and Canada. The health and wellness pioneer also delivers a range of healthy way of life programs and information via its complimentary Life Time Digital app. The Company’s healthy living, healthy aging, healthy entertainment communities and ecosystem serve people 90 days to 90+ years old and is supported by a team of more than 45,000 dedicated professionals. In addition to delivering the best programs and experiences through its clubs, Life Time owns and produces nearly 30 of the most iconic athletic events in the country.

SOURCE Life Time, Inc.