For Leonardo Oliveira, running isn’t just exercise; it’s a way of life. “Running has been my favorite activity for 20+ years,” he shares. “It’s meditation to me, where I balance out the stress and generate ideas.”
This November, the 45-year-old from São Paulo, Brazil, is bringing that meditative focus to his third marathon—the TCS New York City Marathon. He’s taking on this challenge as a proud member of Team AFBS, channeling his passion into a powerful mission to help find effective treatments for the rare neuromuscular disease Nemaline Myopathy (NM).
Understanding the Mission
Nemaline Myopathy is a rare neuromuscular condition that causes muscle weakness of varying severity throughout the body. It can affect a person’s ability to walk, move, swallow, and even breathe.
A Foundation Building Strength (AFBS) is the leading global organization dedicated to funding research to find treatments and therapies for this rare disease. By supporting Team AFBS, you are directly fueling the science that brings hope to families impacted by NM, as 100% of all donations go directly to funding research.
A Run Fueled by Friendship (and in Memory)
Leonardo’s journey to Team AFBS began with a conversation with his friends, AFBS President Leticia Machado and Board Member Guilherme Machado, about their daughter, Cecelia (Ceci), who lives with NM.
“Talking to Leticia and Gui at a party last year I found out about the possibility of fundraising for AFBS,” he recalls. “I decided that NYC would be the race and this would be my great challenge for this year!”
His run for Ceci has since taken on a second, deeply personal meaning. Leonardo is now also running in honor of his dear running friend who passed away in September during a Trail run, Rogerio Pereira. With a dual dedication, every mile will be a tribute to both life and legacy.
Resilience, Maturity, and Family
As a seasoned runner, Leonardo’s main goal for this race is “not getting hurt.” His training has been a test of patience and smart recovery. “I’ve come from an injury… so quite a challenging cycle,” he explains.
The setback, however, brought an unexpected reward. “I had to learn to run slower than I was used to, but that has given me resilience and maturity.”
He also balances this intense training with a busy family life. “I’ve got three kids so it’s been a challenge just to find time for long runs,” he says, “but they’ve been my biggest supporters.” This support, along with the encouragement from his running friends and co-workers, has been a huge reward.
More Than a Race: The Trip of a Lifetime
Leonardo’s excitement for November isn’t just about the marathon; it’s also about the journey. He is traveling to New York from Brazil with his 74-year-old mother, who’ll be joining members of the NM community to cheer Leo on from the sidelines. “The trip was her birthday present,” he says. “We’re very excited to be part of it.”
He has a simple, powerful message for anyone considering a donation: “Every bit matters!! You’ll be incentivizing the life of special people and treatment of a rare condition, while supporting a marathon runner’s mission!”
Help Leonardo reach his goal! Support his run and help fund the future of NM research by donating to his fundraising 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.
Donate to AFBS: Your monetary gift to Leo’s Marathon Fundraising page 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 so we can connect you with valuable resources, support, and opportunities to get involved with upcoming research studies!
Fuerza y ánimo Leo!!!