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 is the Executive Director of A Foundation Building Strength (AFBS), where she leads the organization’s strategic direction, research and community initiatives to accelerate progress in Nemaline Myopathy. Since stepping into the role after serving as Development Director, Jen has been at the forefront of AFBS’s growth—driving fundraising, communications, and patient engagement strategies that have expanded the foundation’s reach and impact.

With a career rooted in nonprofit leadership, Jen has worked with global partners to advance research and improve outcomes for individuals living with life-threatening diseases. Her deep commitment to AFBS’s mission, combined with her collaborative leadership style, has positioned the foundation as a key force in rare disease research. Jen lives in San Diego with her husband and two daughters and brings both passion and purpose to her work every day.

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.