When Adelaide McCarter laces up her running shoes along the breezy Chicago lakefront, she brings a unique perspective to every stride. As a 21-year-old senior studying biomedical engineering at Northwestern University and working part-time as a medical assistant, she spends her days immersed in the mechanics of human physiology and the realities of patient care.
Yet when she takes on the historic streets of the five boroughs this November at the 2026 TCS New York City Marathon, she won’t just be testing her own physical limits. Running her very first marathon, the Evanston native is turning 26.2 miles into a vehicle for life-changing scientific discovery.
Honoring the Founders’ Vision
While Adelaide has several half marathons under her belt, stepping up to the full marathon distance was an undertaking she knew had to carry purpose.
“Running for a charity was really important to me as I took on my first marathon,” Adelaide explains. “Having the opportunity to run a marathon is such a privilege, and I feel incredibly lucky to take on this challenge. I’m especially grateful to be supporting AFBS (A Foundation Building Strength) and research for Nemaline Myopathy. Funding research is so important, particularly for rare diseases that may not otherwise receive the same attention or resources. Knowing that every mile and all the hours spent training are contributing to something bigger than the marathon itself makes the experience that much more meaningful.”
Nemaline Myopathy (NM) is a rare congenital neuromuscular disease that impacts the structural proteins within skeletal muscles, leading to generalized muscle weakness throughout the body. The condition presents constant daily challenges with fundamental functions like walking, posture, swallowing, and breathing. Because NM currently remains a condition with no approved biomedical therapies, the targeted research driven by A Foundation Building Strength is essential to unlocking clinical solutions.
Adelaide’s commitment is rooted in a close personal connection. She’s running in honor of the Guillet family, whose daughter, Ava, inspired the very founding of AFBS.
“I’ve been fortunate to know AFBS founders Marc and Dana through my family, so having the opportunity to support a cause that means so much to them is especially meaningful,” she shares. “I’m honored to support the work they started for their daughter, Ava, and the entire NM community.”
Balancing Labs, Clinics, and Summer Miles
Tackling high-volume marathon preparation while balancing senior-year coursework in engineering and clinical work has required disciplined time management.
“Training has been challenging but incredibly rewarding!” Adelaide says. “I’m a senior studying biomedical engineering at Northwestern and also work part-time as a medical assistant, so one of the biggest challenges has been balancing training with school and work. The Chicago summer heat has definitely added another challenge, so I’m very ready for some fall running weather! The most rewarding part has been watching myself accomplish distances I never would have imagined I could run just a few months ago. Each long run has made me more confident and excited for New York!”
Along the way, Adelaide’s journey has been buoyed by the people around her.
“I’m so lucky to have the most amazing and supportive friends, and running has honestly brought me so much closer to them,” she adds. “They’re always excited to join me for a few miles of a long run, and sometimes even the whole thing! They bring so much positivity, fun, and encouragement to training, especially during the miles when I need it most. Having people who are genuinely excited for me and willing to be part of this journey has made training for my first marathon so much more special!”
Advancing Research with Every Stride
For Adelaide, race day is not about locking into a rigid pace or watching the clock. Instead, she is focusing on crossing the finish line in Central Park healthy, joyful, and proud of the broader difference she is helping create.
Thanks to direct outreach to family and friends, she has already surpassed her personal fundraising goal for AFBS, introducing dozens of new supporters to the foundation’s work.
“Personally reaching out to friends and family has definitely been the most successful part of my fundraising,” Adelaide notes. “It’s been especially meaningful to see people not only excited to donate, but also take the time to learn more about Nemaline Myopathy and the research their donations are supporting.”
Every dollar Adelaide raises flows directly into research initiatives funded by AFBS, the only non-profit organization dedicated solely to finding treatments for Nemaline Myopathy. Because rare disorders rarely attract large pharmaceutical capital, grassroots support from marathon teams directly finances laboratory studies, preclinical models, and clinical trial preparation.
“I would tell them that every donation, no matter the size, really does make a difference,” Adelaide says to anyone considering supporting her run. “Rare diseases like Nemaline Myopathy often don’t receive the same attention or research funding as more common conditions, which makes support from donors so important. Donating isn’t just supporting me as I run my first marathon, it’s helping support research that can make a meaningful difference for people with NM and their families.”
As Adelaide steps onto the Verrazzano-Narrows Bridge this November, she will be carrying her scientific curiosity, the enduring strength of the Guillet family, and the knowledge that every stride moves research one step closer to a cure.
Support Adelaide’s Journey
Please consider supporting Adelaide, 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!