For Fernanda Depari Estelles Martins of São Paulo, Brazil, taking on a new challenge is second nature. Last year, to celebrate her milestone 40th birthday, she completed an incredible 40 races. This year, she’s channeling that same determination into her biggest athletic challenge yet: the TCS New York City Marathon. But this race is different. On November 2nd, when the ceremonial cannon fires to signal the start of this iconic race, she’ll be running with a purpose that extends far beyond the finish line. Fernanda won’t just be running for herself; she’ll be running as part of Team AFBS (A Foundation Building Strength for Nemaline Myopathy) for a cause that has become deeply important to her.
Fernanda is running in honor of Cecelia, the youngest daughter of her close friends, AFBS Board President Leticia Machado and Board Member Guilherme Machado. Cecelia was born with Nemaline Myopathy (NM), and watching her journey has profoundly impacted Fernanda, turning a marathon from an impossible idea into an undeniable mission.
Understanding the Mission
Nemaline Myopathy (NM) is a rare neuromuscular disease that causes muscle weakness throughout the body. For children like Cecilia, this can impact everything from the ability to walk and move to essential functions like swallowing and breathing.
A Foundation Building Strength for Nemaline Myopathy (AFBS) is the world’s leading nonprofit organization dedicated solely to finding effective treatments for NM. AFBS works to accelerate research and bring hope to families worldwide. For Team AFBS runners like Fernanda, every mile is a step toward that goal, as 100% of all donations go directly to funding critical research initiatives.
A New Challenge for a Cause
Fernanda’s decision to run was driven by her admiration for the Machado family:
“Watching Leticia and Gui face every challenge with so much strength for Cecilia has been profoundly inspiring. When I saw the opportunity to run for Team AFBS, I knew it was something I had to do. It’s my way of fighting alongside them.”
This marathon represents a significant step up from her previous running accomplishments. Training for 26.2 miles has brought its own unique set of hurdles. “It’s not easy to find the time and energy to train,” Fernanda admits, citing the difficulty of balancing a demanding schedule between work and family. On top of that, she had to overcome a painful IT band injury during her training.
So what keeps her going when the challenges mount?
“I think of Cecilia’s smile and the resilience she shows every single day,” Fernanda says. “Her fight is so much harder than any training run I’ll ever do, and that thought gets me through every single mile.”
The True Finish Line: Hope for Treatments
For Fernanda, the real finish line isn’t in Central Park—it’s in the research labs funded by AFBS. Her mission is to raise critical funds that will accelerate the search for effective treatments for Nemaline Myopathy.
She has a clear message for anyone considering supporting her run.
“This isn’t just about helping me run a race. It’s about giving hope to an entire community,” she explains. “Every donation, no matter the size, is a concrete step closer to a future where children like Cecilia have the treatments they need to thrive. You are investing in a brighter future for so many families.”
This November, Fernanda will prove that passion and purpose can conquer any distance.
Help Fernanda turn her miles into medicine! Please consider supporting her inspiring journey by contributing to her 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 Fernanda’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!