Youth Ambassadors

Greta Baier serves as a youth ambassador for A Foundation Building Strength for Nemaline Myopathy.  Greta was diagnosed with NM at 20 months and is affected by the NEB gene.  Some of Greta’s best memories are at NM conferences, summer gatherings her family has hosted, and cheering on the AFBS charity team during the NYC marathon weekend. 

Some of her favorite things to do are dance (she dances with Born Dancing, an inclusive dance company), sing, blog (https://gretability.blog/), go to Broadway shows, try out new restaurants in the city, and travel. She also enjoys hanging out with her friends and her Canine Companions service dog, Midas. 

In 2021, Greta was named 1 of 10 middle school finalists in the NPR Student Podcast Challenge where she focused on the importance of inclusive dance.  In the future, she hopes to work in tech and to advocate for people with disabilities.

Diagnosed at one month old with ACTA1-related Nemaline Myopathy, Ellary is a passionate self-advocate dedicated to raising awareness, dismantling social barriers, and driving the movement toward effective treatments for the NM community.

A lifelong musician who sings and plays the violin, Ellary uses her creative talents and interest in digital media production to build a welcoming online presence. Through video content and music, she shares her voice to help normalize disability, answer questions about living with NM, and bridge the gap between curiosity and understanding. In her free time, she also loves boating, swimming, and spending quality time with her family and friends.

Looking to the future, Ellary aims to channel her passion for media into a marketing career centered on authentic disability representation.

Meet Gavi, a trailblazer and passionate advocate for the Nemaline Myopathy community! Living with NEB-related NM, Gavi uses a power wheelchair, tracheostomy, ventilator, and G-tube. She is dedicated to breaking down disability stigma, fighting ableism, and helping people see beyond quick assumptions.

A pioneer in adaptive sports, Gavi holds the title of Canada’s first female Volt Hockey player and has traveled internationally to compete in tournaments from Ontario and Calgary to Sweden. When she’s not on the court, Gavi loves painting, reading, watching comedies with a bowl of Takis, and FaceTiming her close friends in the NM community.

As an AFBS Youth Ambassador, Gavi wants to share her story widely, educate others on the life-changing impact of medical technology like trachs, and give back to the foundation that unites her community. Her message to everyone living with NM is simple and powerful: “Embrace, accept, and be proud of your disability. Grab every opportunity that you can and live your life to the fullest.”

Kate Mitchell was a beloved inaugural member of the youth ambassador program for A Foundation Building Strength for Nemaline Myopathy. Diagnosed with NM at the age of two, Kate was a shining example of resilience, kindness, and determination. She generously shared her experiences living with NM caused by the NEB gene, inspiring countless young individuals and families within the community.

A creative spirit with a passion for the arts, Kate enjoyed spending time with friends, watching movies, baking, and listening to music by artists like Gracie Abrams, Taylor Swift, and Dominic Fike. She recently graduated from a high school in suburban Chicago, where she excelled in Latin and Creative Writing and was actively involved in theatre, both in production and as a member of the program’s executive board.

Kate had recently begun attending NYU and had dreams of pursuing a career in the film industry, where she hoped to advocate for disabled representation and inclusion. Though her time was tragically cut short, Kate’s legacy of strength, compassion, and advocacy will continue to inspire us all.

We are deeply grateful for Kate’s contributions to A Foundation Building Strength and the Nemaline Myopathy community. Her memory will forever be a source of inspiration.