For Lucas Ross, athletic challenges have always been part of life. Growing up in Palo Alto, California, he spent years on the move playing competitive lacrosse and basketball, later testing his endurance with casual distance runs, a 10K, and a half marathon. But as he entered his senior year at Southern Methodist University (SMU) in Dallas, Lucas decided it was time to step up to something much bigger: 26.2 miles through the five boroughs in the 2026 TCS New York City Marathon.
In many ways, the race is a family tradition. Lucas’s aunt has run the historic New York course multiple times, giving him a front-row appreciation for the electric atmosphere and the grit it demands. Yet when it came time to register for his own debut marathon, he wanted to ensure his miles carried a purpose far beyond a personal finish line.
Running for an Entire Community
That search led Lucas to Team AFBS and right back to his Palo Alto roots. His neighbors are Marc and Dana Guillet, who founded AFBS 18 years ago when their daughter, Ava, was diagnosed with Nemaline Myopathy (NM). Growing up alongside the Guillet family gave Lucas an appreciation for the organization’s mission from an early age. He entered the race feeling a call to rally around the entire community fighting the disease.
“I wanted to challenge myself while also running for a cause that makes the experience much more meaningful,” Lucas explains. “The opportunity to support AFBS and Nemaline Myopathy research made the NYC Marathon especially exciting. I’m not running in honor of one specific person, but I’m running for everyone affected by Nemaline Myopathy and their families.”
Nemaline Myopathy is a rare congenital neuromuscular disorder that disrupts the thin filaments within skeletal muscles, leading to muscle weakness throughout the body. The condition creates severe, everyday challenges with basic physical functions like walking, maintaining posture, swallowing, and breathing. Because NM remains an untreatable disease with no approved therapies, families rely on exhausting therapy schedules just to preserve mobility and independence.
By joining Team AFBS, Lucas is using his debut marathon to bring visibility to a community that often fights out of the public spotlight, and support the vital work his neighbors started nearly two decades ago.
Balancing Books and Base Mileage
Preparing for your first marathon is a massive undertaking under any circumstances, but doing it while navigating senior year of college brings its own unique hurdles. High-mileage training blocks mean early mornings and tight schedules, carving out long weekend runs between classes, study sessions, and the social rhythm of campus life.
“Training has been going well so far,” Lucas says. “The biggest challenge has been building up my mileage while balancing school and everything else, but seeing the progress each week has been very rewarding.”
Lucas’s approach to training emphasizes longevity and discipline. His primary athletic objective is simple and focused: maintain consistency, remain injury-free through the peak volume weeks, and cross the finish line in Central Park feeling strong.
Throughout the process, the encouragement of those around him has kept his motivation steady.
“Having the support of my family and friends has been a huge source of motivation,” he shares. “Knowing that people are supporting both my training and the cause makes it easier to stay committed.”
Direct Outreach for Critical Research
Alongside his physical training, Lucas is committed to raising as much funding and awareness as possible for A Foundation Building Strength (AFBS).
AFBS is the only non-profit organization dedicated exclusively to funding biomedical research focused on finding viable treatments for Nemaline Myopathy. Because rare disorders rarely receive broad government or pharmaceutical research funding, grassroots teams like AFBS play an indispensable role in moving laboratory discoveries forward into clinical trials.
To reach his goal, Lucas has leaned on direct, authentic conversations across his network, educating peers, family members, and friends about the realities of NM.
“Reaching out directly to family, friends, and my broader network has been the most effective,” Lucas notes. “I’ve found that explaining why I’m running and what the funds support helps make the cause more personal.”
When asked what he would say to anyone considering a gift to his campaign, his message is clear and grounded in collective impact:
“Every donation, regardless of size, makes a difference. Your support helps fund important Nemaline Myopathy research, and I’m incredibly grateful to everyone who contributes.”
When Lucas takes his first strides off the Verrazano-Narrows Bridge this November, he’ll be carrying the pride of his family, the support of his college community, and a shared mission to deliver real treatments to families living with Nemaline Myopathy.
Support Lucas’s Journey
Help Lucas reach his fundraising goal and fund crucial research for the entire Nemaline Myopathy community. You can read more about his journey and make a donation directly to his personal campaign by visiting his GoFundMe Page.
A Foundation Building Strength (AFBS) is a nonprofit organization dedicated to accelerating the development of treatments for Nemaline Myopathy. Our mission is to fund cutting-edge research to find effective treatments while providing resources and a strong community for families affected by NM. We are proud to be at the forefront of driving Nemaline Myopathy research breakthroughs forward through collaborations with research teams across the globe.
Donate to AFBS: Your monetary gift will support critical research and provide vital resources for NM families.
Stay Connected: Sign up for our email list to receive the latest updates from AFBS and learn more about NM research. Are you an individual or a caregiver of an individual affected by NM? Fill out the AFBS Contact Survey to be connected with valuable resources, support, and research opportunities! Visit our “Get Involved” page for even more ways to connect!