Only months ago, the idea of running 26.2 miles seemed almost out of reach for Fernanda Borghese. Earlier this year, the 42-year-old from São Paulo, Brazil, received an alarming diagnosis: a tumor in her knee that required immediate surgery. At the time, simply regaining normal mobility was the priority. Long-distance racing was not on the calendar.
Then, just weeks after her procedure, Fernanda stood on the sidelines of the London Marathon watching her boyfriend, André, push through his own injury to reach the finish line. Seeing his grit sparked something unexpected. She realized she wanted that same sense of accomplishment, not just to prove what her body could do after surgery, but to turn her recovery into something meaningful.
When she reconnected with her friend Letícia Machado and learned about Letícia’s daughter, Ceci, and the work of A Foundation Building Strength (AFBS), the path clicked into place. Cecilia was diagnosed with a rare disease called Nemaline Myopathy (NM) as an infant, and AFBS is the only non-profit foundation dedicated exclusively to funding biomedical research focused on discovering effective treatments for NM.
“New York became more than a marathon,” Fernanda explains. “It became a personal challenge, a celebration of resilience, and a way to run for something much bigger than myself.”
Running for an Entire Community
While many runners enter the TCS New York City Marathon chasing personal milestones, Fernanda is dedicating her very first marathon to a wider cause: the children and families navigating the rare condition, Nemaline Myopathy (NM).
NM is a rare congenital neuromuscular disorder that disrupts the thin filaments within skeletal muscles. Caused by genetic mutations, Nemaline Myopathy causes widespread muscle weakness. For those living with the disease, basic daily functions like walking, holding up the head, swallowing, and breathing can present immense hurdles. Because NM is has no approved biomedical therapies, families rely on extensive, daily physical therapies while researchers work to develop clinical breakthroughs.
Hearing Ceci’s story and seeing the daily resilience of the NM community inspired Fernanda to step forward as a champion for the cause.
“I’m running in honor of all the children and families facing rare diseases, for their courage, their strength, and the hope that research can bring them a better future,” she says.
Rebuilding Strength and Trust
Training for a debut marathon is a massive undertaking under ordinary circumstances, but going from knee surgery to a 42-kilometer (26.2 Mile) training block in a matter of months demanded rare mental resolve.
“Training has been going really well, and seeing my body become stronger every week has been incredibly rewarding,” Fernanda says. “The biggest challenge has been learning to trust my knee again after surgery and pushing my limits without being afraid. Every long run feels like another victory. Going from surgery to training for 42K in just a few months has shown me that I’m capable of much more than I imagined.”
Throughout the journey, Fernanda hasn’t been alone. She leans on André, an experienced marathoner who has paced her through long runs and offered constant tactical advice, alongside her mother, who has cheered her on every step of the way.
“Having the people I love beside me has made this about so much more than running,” she shares. “It has become a shared adventure.”
On race day, Fernanda has set an ambitious athletic target: crossing the finish line in Central Park in under four hours.
Anchor Donors and Record-Breaking Impact
Fernanda brought that same fearless ambition to her fundraising. Setting an initial target of $25,000 for AFBS, she developed a deliberate, strategic approach she calls “pilot fishing.”
“The most successful strategy has been ‘pilot fishing’, starting with a very targeted list of big anchors,” Fernanda explains. “I first reached out personally to people I knew could make a significant contribution and help build momentum. Once those first major donations came in, I expanded the campaign to a broader community. The combination of personal connections, a strong story, and ambitious fundraising goals has been incredibly powerful.”
The results speak for themselves. Fernanda has already surpassed her goal, raising over $35,000 for A Foundation Building Strength (and still going strong!)
Every dollar she raises goes straight to funding promising scientific research to uncover effective treatments for Nemaline Myopathy. Because rare conditions struggle to secure public funding or pharmaceutical interest, grassroots teams like AFBS rely on these contributions to fund natural history studies, laboratory models, and clinical trial preparation.
“Your donation is not just supporting my marathon,” Fernanda says to anyone considering supporting the cause. “It is helping fund research, create hope, and potentially change the future for children and families living with Nemaline Myopathy. Every contribution, no matter the size, becomes part of something much bigger. I’ll run the 42K, but we can make the difference together.”
When she steps onto the Verrazzano-Narrows Bridge this November, Fernanda will carry the strength of her own recovery and the collective hope of families around the world, turning 26.2 Miles into a celebration of what happens when resilience meets purpose.
Support Fernanda’s Journey
Please consider supporting Fernanda, Team AFBS, and the individuals and families at the heart of this mission. 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!