For Tiffany Hotchkiss, running has long been an anchor in a full, fast-moving life. Long training blocks mean fitting high mileage around a full-time career, regular travel, and everyday family routines. Yet whether she is logging early miles before the workday begins or chasing the fading light at dusk, she finds clarity in the rhythm of the road.
Now preparing for her fifth marathon, the forty-four-year-old from Park City, Utah is taking that dedication to one of the world’s grandest stages: the streets of the five boroughs in the 2026 TCS New York City Marathon.
Taking the Cause to the Five Boroughs
As an experienced endurance athlete, Tiffany understands the physical demands of twenty-six point two miles. But this race represents something different. Rather than running purely for a personal milestone, she chose to represent Team AFBS to put a national spotlight on a rare medical condition that touches close to home: she is a friend of AFBS founders Marc and Dana Guillet, who established the foundation 18 years ago after their daughter, Ava, was diagnosed with Nemaline Myopathy..
“I wanted to increase awareness of Nemaline Myopathy and what better place to do it than the famous NYC marathon!” Tiffany says.
Nemaline Myopathy (NM) is a rare congenital neuromuscular disorder that disrupts the function of skeletal muscles. Stemming from genetic mutations that weaken the body’s muscle fibers, NM causes widespread muscle weakness. For individuals living with the condition, everyday essentials like walking, swallowing, and breathing can present significant hurdles. NM remains an untreatable disease, leaving families reliant on supportive therapies while researchers work tirelessly to identify therapeutic breakthroughs.
By wearing the Team AFBS race bib in New York, Tiffany aims to introduce spectators and supporters to a community that often goes unseen.
Finding Strength in the Mountains
Fitting marathon preparation into a busy lifestyle requires relentless discipline. Tiffany balances demanding work commitments and travel with the high weekly volume necessary to line up in Staten Island feeling strong.
“The biggest challenge has been finding time to fit all of the mileage in while working full time, traveling, and fulfilling general life obligations,” she explains.
Yet amidst the busy calendar, Tiffany discovers daily renewal in the discipline of training. She makes it a priority to head for high elevation whenever possible, allowing the landscape to center her focus and build endurance.
“The biggest reward is having the opportunity to train in beautiful places and see sunrises and sunsets,” she says. “I love being able to train in the mountains as they bring me strength and peace.”
Gratitude on the Course
Tiffany’s goals for race day reflect a seasoned marathoner’s perspective. Rather than chasing a strict finishing time, she is focused on running with gratitude and elevating the cause with every mile.
“I want to raise awareness through fundraising and complete the race feeling great, as I am very thankful for the opportunity,” she shares.
Her fundraising efforts lean on personal conversations and word-of-mouth outreach, spreading information about Nemaline Myopathy to friends, colleagues, and community members. Every dollar raised through her campaign flows directly to A Foundation Building Strength’s research efforts.
AFBS is the only non-profit foundation dedicated exclusively to funding biomedical research focused on finding viable treatments for Nemaline Myopathy. Because rare disorders rarely receive broad government or pharmaceutical research capital, grassroots fundraising initiatives like Team AFBS are essential to driving laboratory studies forward and creating pathways toward clinical trials.
When Tiffany crosses the Verrazzano-Narrows Bridge and navigates the roaring crowds through the neighborhoods of New York, she’ll carry the power of a shared mission, helping bring effective treatments for Nemaline Myopathy one step closer to reality.
Support Tiffany’s Journey
Help Tiffany 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!