When Laura Gonçalves Landi steps up to the starting line of the TCS New York City Marathon this November, she won’t be running alone. She will be carrying a lesson learned from a special student across two transformative years inside a preschool classroom in Brazil.
Laura, 31, has been running since she was a teenager. For more than 15 years, distance was an individual pursuit, measured in solitary mornings, the rhythm of shoes on pavement, and a steady stream of more than ten half-marathons. Long runs were a familiar discipline, but the full marathon remained a distance threshold she hadn’t been inspired to cross until she met Cecilia Machado.
Cecilia is a bright, spirited child living with Nemaline Myopathy (NM), a rare congenital neuromuscular disease. Caused by genetic mutations that affect the thin filaments of skeletal muscle, NM causes widespread muscle weakness. For many individuals, it presents daily hurdles in basic motor functions, swallowing, and breathing. It remains, for now, an untreated condition, requiring families to navigate intense routines of physical, speech, and occupational therapies just to preserve everyday mobility.
A Classroom Revelation
For Laura, watching a small child tackle those demanding regimens changed everything.
“For two years, I had the privilege of being a teacher of Cecilia,” Laura explains. “I came to understand not only the challenges and barriers she faced, but also her strength, resilience, and the unique ways she experienced the world. Being her teacher changed the way I see inclusion, accessibility, and the importance of giving every child the opportunity to thrive.”
That connection quickly bridged the gap between school and life. Cecilia’s parents, Leticia and Guilherme Machado, serve on the board of A Foundation Building Strength (AFBS), the only US-based nonprofit dedicated exclusively to advancing scientific research to uncover effective treatments for Nemaline Myopathy. When Laura learned that Team AFBS fielded runners in New York, the challenge took on an unmistakable clarity.
“I took it as a personal challenge,” Laura says. “To prepare my body and mind to run my first full marathon for a cause that means so much to me.”
The Road to 26.2 Miles
Transitioning from half-marathons to the full distance required restructuring her daily life. Laura reshaped her sleep, overhauled her nutrition, and organized her social calendar around the grueling demands of high-volume training. To make sure she was ready for the five boroughs, she tackled the Rio de Janeiro City Marathon earlier this year as a live, 26.2-mile benchmark.
Now, with one full marathon under her belt, she has set an ambitious athletic target for New York: finishing in under four hours to beat her personal record. Yet whenever the training miles grow steep, her focus turns back to the classroom in Brazil.
“My goal is to follow the training sections with the same determination and earnestness as Cecilia follows her daily routine of different kinds of therapy,” she says. “The training has demanded dedication, discipline, and consistency, but knowing who I’m running for makes every mile worth it.”
Laura has not had to carry the journey alone. Friends have stepped up to run alongside her during the longest weekend miles, transforming solitary exhaustion into shared conversation and laughter. Back home, her school community and family have rallied around her, spreading the word across WhatsApp and Instagram to build momentum for her fundraiser.
Fueled by Community and Purpose
All the money Laura raises through Team AFBS goes straight to funding promising scientific research, moving treatments from laboratory benchwork to clinical trial readiness. Because Nemaline Myopathy receives little traditional funding, every dollar raised by grassroots runners directly accelerates life-changing discoveries.
“I’m not running the New York City Marathon just to challenge myself,” Laura says. “I’m running because I had the privilege of knowing Cecilia, teaching her, and seeing firsthand some of the challenges that come with living with Nemaline Myopathy. That experience stayed with me and made this cause deeply personal. Every donation, regardless of the amount, brings us one step closer to a future with better treatments and more possibilities for children and families affected by Nemaline Myopathy.”
When the starting cannon sounds on the Verrazzano-Narrows Bridge, Laura will be running with Cecilia in her heart, turning every stride into hope, resilience, and action.
Support Laura’s Journey
Help Laura Gonçalves Landi reach her fundraising goal and fund crucial research for the entire Nemaline Myopathy community. You can read more about her journey and make a donation directly to her personal campaign by visiting her 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!