This past weekend, Nemaline Myopathy community members of the New York area and our board members came together to cheer on Team AFBS as our five amazing runners tackled the iconic New York City Marathon. In addition to spending months training and bringing awareness to Nemaline Myopathy (NM), these generous marathoners raised over $30,000 for research into treatments for Nemaline Myopathy!
A Pre-Race Celebration
On Saturday, November 2nd, we gathered to celebrate runners Kris Cunniff, Douglas Spaulding, Camila Cilento, Charlene Challenger-Smith, and Emily Reineke in the last hours before they laced up their running shoes to tackle 26.2 miles for NM!
It was an amazing gathering with many families from the local region joining together to mix and mingle, meet our runners, and creating signs to support our runners on race day. They heard the latest updates on AFBS funded research and the impressive things AFBS has accomplished this year; from in person and virtual gatherings to our newly launched webinar series, our newly formed Scientific Advisory Board who are mapping out the future of AFBS research, our successful initiative to increase community participation in the Congenital Muscle Disease International Registry, and our newly focused efforts on bring more awareness to NM!
Connecting with the Community
Our families socialized, and the kids were treated to a science show and henna tattoo artist while their parents listened to the latest foundation updates. 50 members of our group then joined us for a dinner out at a local restaurant where we had more time to connect. We forged new connections and friendships. For some of the children who attended, this was their first time meeting another individual with NM!
We also honored our dear friend and AFBS Youth Ambassador Kate Mitchell, who devastatingly passed away on September 29th, with some words from friend and fellow youth ambassador Greta Baier and Greta’s mom, AFBS Board Member Lyn Baier.
While our international cast of board of directors members regularly meet virtually, this was the first time that almost the entire board (8 out of 9) have been able to connect in person! (Founder and Board President Marc Guillet, Lyn Baier, Sam Lipsick, Matt & Kelly Lloyd, Guilherme & Leticia Machado, and Sharon Fiedler Shimanovsky.)
Race Day
On Race Day, our families reconvened to navigate the city so we could be at the sidelines to cheer on our runners! Navigating the transit system and busy city sidewalks with a group where many use power chairs for mobility was an eye-opening lesson in the lack of accessibility for those with mobility issues. Only a limited amount of subway stations are accessible for wheelchairs, and those that were had small elevators that took several trips to get our group in and out of each station.
Despite the challenges, our group managed to get a prime spot to cheer on Team AFBS. A few of our runners even paused for a quick photo op as they passed by!
The weekend was an incredible experience for our local NM community, and we can’t wait to see even more of our friends from all over the world when we gather in Philadelphia for the SciFam Conference in August of 2025. We hope you’ll join us!
A Heartfelt Thank You
We’re so grateful to our generous runners and the community that turned out to support them! Their dedication and compassion are truly inspiring. There’s still time to make a donation to support Team AFBS and cutting edge Nemaline Myopathy research here!