Team

Marc founded AFBS in 2008 when his third child, Ava, was diagnosed with Nemaline Myopathy after he discovered there were no organizations exclusively dedicated to finding treatments for Nemaline Myopathy. He has been the Executive Director since its inception, with the constant goal and vision of advancing research toward a treatment for NM.

Dr. Dziewczapolski received his bachelor’s degree from the University of Buenos Aires, followed by a Ph.D. in Neuropharmacology. He then moved to the United States to hone his scientific career in neurosciences, spanning eighteen years in research at UC San Diego and the Salk Institute. Gustavo entered the neuromuscular rare disease space in 2016 as the Scientific Director of Cure CMD and then also joined the AFBS team in 2019. He contributes to the evaluation, selection and monitoring of research proposals funded by AFBS and plays the role of liaison between researchers, clinicians, the pharma industry, patients and families with the aim of accelerating NM research, and translation of research discoveries into real therapies. Gus lives in San Diego with his wife and two daughters. 

Jen has been leading the development, fundraising, communications and marketing efforts for AFBS since 2016. She graduated from Loyola Marymount University with a Bachelor’s degree in Business Administration in 2007. She has since been dedicated to the field of non-profit fundraising and communications, working with global non-profit organizations to fund research and improve the lives of those living with life-threatening diseases. Jen lives in San Diego with her husband and two daughters.

Stacy has worked for the Medical College of Wisconsin in both clinical and research capacities since 2003, with a focus on congenital myopathies since 2012 when the biorepository was first launched. She currently assists AFBS with coordination of their community research programming.

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.  A high schooler in New York City, her favorite subjects are math and science.   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.

Ellary serves as a youth ambassador for A Foundation Building Strength for Nemaline Myopathy. Ellary was diagnosed with NM at 1 month of age and is affected by the ACTA-1 gene. Some of Ellary’s favorite things to do are hang out with friends and family, sing, go swimming and go boating. Her favorite subjects in school are ELA and History. In the future she would like to go to college and work in filmmaking. 

Kate Mitchell serves as a youth ambassador for A Foundation Building Strength for Nemaline Myopathy. Kate was diagnosed with NM at the age of two and is affected by the NEB gene. In Kate’s free time, she enjoys hanging out with her friends, watching movies and TV shows, baking, and listening to music by artists like Gracie Abrams, Taylor Swift and Dominic Fike. Kate is a senior at a high school in suburban Chicago and enjoys subjects like Latin and Creative Writing. She is actively involved in theatre both in production and through her role as a member of the program’s executive board. Kate plans to go to college next year and is looking in the Chicago, New York City, and Los Angeles areas. In the future, Kate hopes to work in the film industry, specifically advocating for disabled representation and inclusion.