Ana Amelia Fracalossi is the mom of Alisa, an 11-year-old girl with MED13L syndrome. Originally from Brazil, Ana and her family noticed early developmental delays in Alisa during infancy and began a long, often isolating search for answers. After moving to the United States, they continued therapies and evaluations for years before receiving Alisa’s MED13L diagnosis through exome sequencing when she was seven.

Since then, Ana has become a passionate advocate for connection and community—sharing her family’s story so other parents don’t feel alone in the “medical mystery” years. She speaks openly about the emotional journey of adjusting expectations, the importance of supportive therapies, and the joy of watching steady progress unfold over time. Today, Ana celebrates Alisa’s growing independence, love of sports and the arts, and her continued growth socially, emotionally, and academically as she navigates middle school and pre-teen life.

Inon is a MED13L parent and a film director, living in Los Angeles with his wife Natalie and their children Ilan, Adam and Mali. Ilan received his MED13L-syndrome diagnosis in 2014, when he was 2 years old. The diagnosis spurred Inon on a journey to engage researchers and find therapeutic interventions for his son, but at the time MED13L research was still in its infancy. Several years later, with the formation of the MED13L Foundation, Inon found a passionate team of driven parents who were equally committed to finding a cure for MED13L, and to building a global MED13L community. 

As a film director, Inon is best known for his mental health drama Paper Spiders, which he co-wrote with his wife Natalie. Inon is a graduate of the University of Southern California’s School of Cinematic Arts. 

Katie Johnston, MBA, RICP® (She/Her) is a Wealth Steward for women decision-makers based in New York and the proud mom of two daughters, Addie and Tenley. Addie was diagnosed with MED13L syndrome, a journey that has deeply shaped Katie’s commitment to advocacy, awareness, and research within the rare disease community.

Katie supports the MED13L Foundation through active participation in research initiatives and by generously sharing her family’s story with others navigating a similar path. Through both her personal experience and professional background, she brings a thoughtful, empowering voice to the community—helping families feel informed, supported, and less alone.

Michelle Seaver is a licensed therapist based in Connecticut and the proud mom of twin daughters, Ella and Sophie. Ella was born with MED13L syndrome, while her sister Sophie is not a carrier. Through her personal journey and professional expertise, Michelle brings a deeply informed and compassionate perspective to the MED13L community.

Michelle has been a dedicated supporter of the MED13L Foundation, generously lending her clinical insight, personal story, and ongoing support to help families navigate the emotional and practical challenges of a rare diagnosis. Her commitment to advocacy, connection, and mental health has made a meaningful impact on the Foundation and the families it serves.

Rowan Dias is a student at Deerfield Academy, Class of 2027, and a proud sibling of a child with MED13L Syndrome. Inspired by his family’s journey and the mission of The MED13L Foundation, Rowan spent a summer internship helping launch The Voices of MED13L Podcast. His work focused on setting up the podcast platform and production process with the goal of expanding the Foundation’s reach to more families, researchers, and supporters. Rowan brings a unique sibling perspective to the community and is passionate about using his skills to help amplify the voices of those living with MED13L and drive progress toward connection, research, and hope.