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.

Sarah is the Outreach Coordinator for our PCORI award 2021-2023.  She is an advocate for families with muscle disorders.  She is also part of the Advisory Team for the Congenital Muscle Disease International Registry and the SciFam planning team.

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.

Noah is a recent graduate of Skidmore College where he studied both biology and political science. He is a research assistant in the Beggs Lab at Boston Children’s Hospital, a diving coach for club teams in the Boston area, and an avid traveler. Noah is also a member of the NM community with a KLHL41 NM causing mutation. Noah is excited to be working with AFBS and meeting the broader NM community. 

Greta Baier serves as the 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.