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.

Terry is the founder and principal of Fine Point Consulting, LLC, a boutique fundraising and communications company working with nonprofits and select for-profits. With AFBS, Terry helped secure and manage awards from the Chan-Zuckerberg Initiative, the Patient-Centered Outcomes Research Institute, and more; and helps to support the incredible research and work of the organization and its community.  

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.

Gregory Smith joined AFBS in November 2022. He is studying at Wake Forest University in North Carolina, where he plans to earn his Masters of Accounting. Gregory is originally from the Boston area, and loves spending time with his two dogs, Maui and Betty, watching his favorite sports teams, and seeing his friends and family.

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.