There is an undeniable energy across New York City on marathon morning, with crowds lining the avenues and the entire city coming alive for 26.2 miles. For our Nemaline Myopathy (NM) community, this year’s race was a landmark celebration. Twelve dedicated athletes stepped up to the starting line on Staten Island, navigated the five boroughs, and turned months of training into real progress by raising over $100,000 for life-changing scientific research!
A huge congratulations and thank you to our twelve runners:
Whether taking on their very first marathon or returning as experienced competitors, each runner brought purpose to the pavement and gave our community so much to celebrate!
Saturday: Community at the Pre-Race Brunch
The weekend got underway on Saturday morning in Manhattan, where runners, families, and supporters gathered for a relaxed brunch hosted by AFBS Board Member Lyn Baier and her wife, Kate.
Gathering over bagels and coffee, the morning offered a meaningful opportunity for our runners to sit down face to face with the children, teens, and parents powering their miles. Runners swapped training stories and pre-race excitement with board members, Youth Ambassadors, and families who had traveled in for the weekend.
AFBS Founder Marc Guillet spoke to the room, looking back on the 18 years since his daughter Ava was diagnosed with NM. He reflected on how the search for treatments began with a family’s simple question of how they could help, growing over nearly two decades into a focused international research foundation.
Executive Director Jen Tozer followed with an update on where the team’s fundraising will be invested, outlining ongoing preclinical studies, gene therapy projects, and natural history studies designed to prepare the community for future clinical trials.
“Marathon weekend is always emotional, but Saturday morning brought everything into focus,” Jen shared. “Seeing our runners spending time with the families and youth ambassadors they’re championing gave every mile a clear, personal meaning. Raising over $100,000 is an extraordinary achievement, and every dollar goes straight to the labs working toward treatments. We couldn’t be prouder of our runners or more thankful for everyone who rallied around them.”
Sunday: A Sea of Blue on the Course
On Sunday morning, the quiet energy of Saturday gave way to the excitement of race day as more than a million spectators packed the sidewalks from Bay Ridge to Central Park.
Our community made its presence felt along the route. Friends, family members, and NM advocates came together in bright matching blue shirts as the official AFBS Cheer Squad. Stationed along the course, that crowd of blue waved signs, shouted encouragement, and gave our runners a welcome boost of energy right when the miles grew tough.
That sideline presence, along with part of Saturday’s gathering, was made possible by the Kathryn L. Mitchell Trust. We want to extend our heartfelt gratitude to Patty Mitchell and Laura Oeffling for their generous sponsorship in loving honor of their daughter and former AFBS Youth Ambassador, Kate Mitchell. Kate’s legacy continues to unite and strengthen our community.
Running for a Shared Mission
Out on the course, every runner carried a deeply personal motivation through the streets.
From Recovery to the Finish Line
For São Paulo native Fernanda Borghese, lining up was a major victory in itself. Just months after undergoing surgery to remove a tumor in her knee, Fernanda learned to trust her body again, tackling her debut marathon to celebrate resilience and support Ceci Machado and rare disease families. Backed by her boyfriend André and her mother, she put her “pilot fishing” fundraising strategy into motion, raising more than $37,000 for AFBS before crossing the finish line in Central Park.
Fellow Brazilian runner Monise Ricciardi Oyama Zajakoff completed an inspiring comeback of her own. In 2024, a driver lost consciousness at the wheel and struck Monise during a morning run, causing 11 fractures. After months of rehabilitation, she reclaimed her movement and channeled it into her first 26.2-mile race. Running in honor of Ceci Machado and alongside her close bond with AFBS Board President Leticia Machado, Monise ran to fund treatments for a condition that directly limits physical movement.
Inspired by the Classroom and Family Bonds
Also running with Ceci close to her heart was Laura Gonçalves Landi, who spent two transformative years as Ceci’s preschool teacher in Brazil. Having run half-marathons for over 15 years, Laura was moved by watching Ceci navigate intense daily therapy schedules with determination. That classroom experience reshaped how Laura viewed inclusion and motivated her to step up to 26.2 miles, completing the Rio de Janeiro Marathon earlier this year before taking on New York to beat her personal record and champion her former student.
Taylor Lantz took on the five boroughs driven by a promise made to family. Originally from Iowa and now living in New York, Taylor spent early Saturday mornings running the length of Manhattan from West 168th down to East 3rd to prepare for her marathon debut. She ran in honor of her cousin Greta Baier, a dedicated AFBS Youth Ambassador, turning her miles into a platform to celebrate Greta’s leadership and help speed the search for real treatments.
For veteran endurance athlete Eric Tozer, who lives with Type 1 diabetes, the streets of New York marked his first full marathon since conquering the World Marathon Challenge, finishing seven marathons on seven continents in seven consecutive days more than five years ago. Eric ran to support his wife, Jen Tozer, Executive Director of AFBS, dedicating his 26.2 miles to youth living with Nemaline Myopathy across the country.
Friendships, Roots, and Global Bonds
Tiffany Hotchkiss, a longtime close friend of AFBS founders Marc and Dana Guillet, brought her mountain-trail endurance from the West to the streets of New York. Running through the five boroughs with steady grit, Tiffany used every mile to raise vital national awareness for the NM community and the organization her friends built from the ground up.
Lifelong Danish friends Thomas Kronstrøm and Bo Holden turned their marathon lottery spots into a shared effort. Drawing on decades of friendship that started on soccer fields in Denmark, Thomas (now living in Hoboken) and Bo (visiting from Måløv) ran the entire course side by side, dedicating their miles to Harper Rose, a young Hoboken family friend of Thomas’s.
Former Swedish competitive 800-meter runner Alexander Lundskog traded track intervals for road miles, completing his marathon debut in honor of his aunt Anna and cousin Wilma. Both live with Nemaline Myopathy, and their daily resilience not only carried Alexander through his 26.2 miles, but also served as the primary inspiration behind his decision to pursue medicine and become a doctor.
The Next Generation of Advocates
Our college runners brought fantastic energy and dedication to the team. Lucas Ross, an SMU senior who grew up next door to founders Marc and Dana Guillet in Palo Alto, ran his debut marathon to champion the entire NM community and support the mission his neighbors started 18 years ago. Northwestern biomedical engineering senior Adelaide McCarter balanced coursework and clinic shifts to complete her first marathon in honor of Ava Guillet and her family.
Meanwhile, CU Boulder junior Cecilia Quinones ran a strong third marathon, inspired to run for Team AFBS after her friend Finley represented the team at the 2025 New York City Marathon. Together, they brought the voice and drive of the next generation straight to the finish line in Central Park.
Looking Down the Road
Because Nemaline Myopathy currently has no approved treatments, grassroots events like the NYC Marathon are essential lifelines for our research portfolio.
The $100,000+ raised by this team will be put directly to work funding laboratory studies, validating therapeutic targets, and advancing clinical trial readiness for individuals and families worldwide.
To our twelve runners: thank you for every early-morning training run, every outreach message, and every bit of determination you brought to the streets of New York. And to every donor, volunteer, host, and sideline cheerleader in blue: thank you for showing up and proving that when we move together, we build lasting strength.
Support Our Runners: It’s Not Too Late to Give!
While the race is officially run and the medals have been awarded, our fundraising campaign remains open. You can still show your support for our twelve athletes and help accelerate the next generation of scientific breakthroughs for the NM community.
Visit the official AFBS New York City Marathon Fundraising Page to make a donation in honor of your favorite runner or support the team as a whole!
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!