On Sunday, November 2nd, Team AFBS’s dedicated runners will be at the starting line of the TCS New York City Marathon. Among them are mother and son Amara and Aidan Andrews. They are each running 26.2 miles to honor Liv Shimanovsky, a 13-year-old born with the rare neuromuscular disease, Nemaline Myopathy (NM).
NM causes muscle weakness throughout the body. Specifically, it often affects an individual’s ability to move, breathe, and swallow. A Foundation Building Strength for Nemaline Myopathy(AFBS) is the world’s leading nonprofit working to speed up the search for effective treatments. Amara and Aidan learned about AFBS and its mission through their close friendship with Liv’s mom Sharon and her family.
For Amara and Aidan, however, this marathon is more than just a race. It is a powerful show of support for the NM community. Ultimately, their goal is to fund research to find effective treatments for NM.
Why We Run: A Mission for Treatments
A Mother’s Return to the Pavement
For Amara, an advocate and entrepreneur, her reason for joining the team was clear. “When Liv asks, you run!” she says. This reflects the strong, lasting bond her family shares with Liv and her mother Sharon, who is Amara’s best friend.
Although she has run two marathons before, it has been over a decade since her last race. Consequently, Amara is candid about the challenge of starting again. “Training has been slow and tough honestly,” she admits. “With travel and work, I have not been training as much as I’d like!” Nevertheless, her motivation remains unshakable. To stay on track, Amara relies on a local running group and regular check-ins with Aidan. “I won’t let Liv down!” she says.
A Son’s Balancing Act for a Friend
Running his first marathon, Aidan faces a different kind of challenge: an intense balancing act. As a full-time physics student at the University of Illinois Urbana-Champaign, his schedule is already demanding. In addition, he conducts high-level AI research at two institutions simultaneously—UIUC and UC Berkeley.
“Balancing training with being a full-time university student has been a challenge,” Aidan notes. While his background as a Division 1 hockey player gave him discipline, he says distance running is “a whole new test.” To prepare, he runs a half marathon weekly, building his mileage toward his goal of a sub-four-hour finish. For Aidan, the motivation is simple: “I want to support Liv and her family and use my platform for positive change!”
The True Finish Line: Treatments for Nemaline Myopathy
For both runners, the true finish line is not in Central Park. Instead, it is in the research lab. Their collective goal is to raise significant funds for NM research, directly supporting AFBS’s mission to find treatments for this as-yet untreatable condition. In short, every mile they run translates directly into hope.
When asked what she would tell a potential donor, Amara is clear:
“Every donation makes a real difference—no matter the size.” She explains, “Your support fuels critical research, from advanced technology to gene therapy, that brings hope and possibilities for kids like Liv.”
Aidan agrees, adding that every dollar leaves a lasting legacy. “By donating, you’re not just helping me reach a fundraising goal,” he says. “You’re helping create a stronger, brighter future for those living with Nemaline Myopathy.”
Liv and Sharon will travel from southern California to New York City to cheer them on as they hit the pavement, joined by other members of the NM community. Their presence will be a powerful reminder of the mission pushing this mother-son team forward. Indeed, this November, Amara and Aidan will prove that a family’s love can truly cover any distance.
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 Aidan & Amara’s Marathon Fundraising pages 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!
Lessssss gooooo!!! Xoxox prayers for everyone
This is wonderful best of luck—run run run!!