Supporters, friends, AFBS Board Members and NM families joined together on November 5, 2022 in New York City to celebrate our incredible Team AFBS runners who participated in the 2022 TCS NYC Marathon. Traveling from Sweden, Brazil, South Carolina and beyond, we gathered to share stories, make race signs and appreciate our incredible community.

We heard from AFBS founder, Marc Guillet, on the latest promising progress in Nemaline Myopathy research. Watch this video to get a brief update on the exciting research underway, as we move closer to finding a treatment for NM.

On Sunday, November 6, Team AFBS runners set off to run 26.2 miles through the five boroughs of NYC, after collectively raising over $25,000 for NM research. AFBS Youth Ambassador, Greta Baier, and her mom and AFBS Board Member, Lyn Baier, along with founder, Marc Guillet, and AFBS Development Director, Jen Tozer, joined in the spectating along with the runners’ enthusiastic families and friends.

Hailing from Brazil and first to pass by the Team AFBS Fan Club cheering area was Rafaela and Gustavo Bassetti, running in honor of 4 year old, Cecilia Machado, who lives with Nemaline Myopathy. Her parents and AFBS Board Members, Leticia and Guilherme Machado, joined the cheering and gratefully embraced the married couple as they energetically ran by with photos of Cecilia on their backs. Learn more about Rafaela’s and Gustavo’s fundraising efforts to support Cecilia and NM research.

The next runner up was an incredibly inspiring mom, Erica Redinbo, from South Carolina. She was running for Team AFBS at the NYC Marathon for the 2nd time. Joined by her parents, David and Melissa Dillon, her husband Jason Redinbo and their children, Harper and Logan, Erica had a huge fan club cheering her on. Erica has run these races and raised over $25,000 over the years for AFBS and NM research, in memory of her beautiful angel Kinsley, born with Nemaline myopathy, who passed away at age 2 in 2018. Erica was recently featured on WCNC Charlotte news, sharing Kinsley’s story and why she’s running in her memory. Check out her compelling video interview here. And another interview here. And this one too!! We are beyond in awe and grateful to Erica and her beautiful and loving family. You can check out her fundraiser here.

The next Team AFBS runner, coming all the way from Sweden, was Aleksander Tasevski. This was Aleksander’s first marathon ever! After attending the 2022 SciFam Conference in Nashville, TN earlier this year with NM mother-daughter duo, Anna Hallgren and Wilma Hallgren, Aleksander wanted to do more to support his dear friends living with NM. He started training and raised money for NM research, culminating his efforts with the NYC Marathon. With his wife, Ulrica, cheering along the sidelines with Anna and Wilma and the AFBS Fan Club, Aleksander cheerful stopped by to give her a kiss and take a quick break. Wow, Aleksander, we are so impressed and proud of you!

Tears of joy and gratitude were shed by families, friends and the entire fan club. It was a beautiful and hopeful celebration of hard work, dedication and motivation to not only finish the race, but bring us closer to Nemaline Myopathy treatments. Thank you to everyone who supported Team AFBS runners, and especially huge thank you to the runners!

Greta Baier in NYC