The 2023 TCS NYC Marathon was more than just a race; it was a powerful demonstration of collective strength, determination, and unwavering support for those affected by Nemaline Myopathy (NM). A Foundation Building Strength (AFBS) spearheaded a team of remarkable individuals who not only laced up their running shoes but also rallied communities and hearts to raise over $23,000 for NM research. Their efforts not only supported a cause but also brought greater awareness to NM, a rare congenital muscle disease.
Among the inspiring group of runners were six individuals whose personal connections to NM fueled their passion for this cause. Alejandra, a former distance runner at UCLA, embarked on her first marathon at the age of 40, fueling her enthusiasm by running for AFBS, a charity close to her heart through her friendship with AFBS’s founder, Marc Guillet. Her commitment and drive to support this cause mirrored that of the other five runners, each with their own poignant stories.
Renny and his family, intimately acquainted with the daily challenges of NM through their youngest son Luke, ran with the determination to pave the way for potential treatments. Marcelo, traveling from Brazil, has close ties to the Machado family, who have a daughter with Nemaline Myopathy, Ceci, fueling his determination to run and raise funds.
Emily, despite health setbacks preventing her from running, raised a substantial sum, showcasing the unyielding support she holds for the cause, inspired by her connection to Greta Baier, an AFBS youth ambassador and a shining example of resilience within the NM community. Christin, a dedicated employee at Agile Physical Therapy, felt a deep sense of honor in supporting AFBS, considering the foundation’s significance to the company’s CEO, Marc Guillet, who founded AFBS 15+ years ago when his daughter Ava was diagnosed with NM.
Kara, whose personal battle with a rare and aggressive breast cancer led her to find hope and community support. She now stands alongside her local Rhode Island community member, Ellary Kinnane, a teenager living with NM and an AFBS youth ambassador, united in their fight for treatments for NM.
The collective efforts culminated not only in a marathon but in a powerful gathering where the NM community, runners, and their families united, sharing stories, strength, and hope. The pre-marathon gathering hosted by AFBS and the Baier family provided a poignant opportunity for these individuals to bond, share experiences, and draw strength from one another, underlining the true spirit of unity and support.
The images captured during the gathering and marathon itself portray more than just a physical journey. They capture the resilience, hope, and unity of individuals determined to make a difference in the world of NM. Their strides in the marathon were not only steps forward in miles but also in the collective fight for the NM community, advocating for research, treatments, and a brighter future for those affected.
The 2023 TCS NYC Marathon wasn’t just about crossing a finish line; it was about the immense heart and spirit that carried these runners forward, fueled by a deeper purpose to bring strength and hope to those impacted by Nemaline Myopathy.