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 a constant goal and vision of advancing research toward a treatment for NM.

Jen has recently assumed the role of Executive Director at AFBS, transitioning from her previous position as Development Director. Since 2016, she has been instrumental in spearheading the development, communications, marketing and community engagement efforts for the foundation. 

Demonstrating a steadfast commitment to the nonprofit sector throughout her career, she has collaborated with global organizations to fund vital research and initiatives aimed at improving the lives of individuals facing life-threatening diseases. Her leadership has been instrumental in advancing AFBS’ objectives and expanding its reach. Residing in San Diego with her husband and two daughters, Jen brings not only professional expertise but also a profound dedication to serving the community.

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. 

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.

As Manager of Communications & Development, Kate connects AFBS with its community and the world through compelling storytelling and impactful messaging. She leads communications efforts, crafting website content, managing social media campaigns, and producing videos, leveraging her 15+ years of experience in film, TV production, and graphic design. Passionate about building relationships and expanding AFBS’s reach, Kate also focuses on fundraising and community outreach to increase awareness about Nemaline Myopathy and ensure the organization has the resources to drive research and support the NM community.

Laura brings her unique expertise, enthusiasm and dedication to provide crucial administrative support in our mission to find treatments for Nemaline Myopathy. Based in Palo Alto, CA, with her husband and three daughters, she tirelessly works to keep NM families and donors connected, ensuring efficient operations and impactful efforts within our community.