The Voices of MED13L

"The Voices of MED13L" is a podcast dedicated to raising awareness, sharing stories, and building community around MED13L syndrome—a rare genetic disorder that affects development and communication. Each episode highlights the voices of families, experts, and advocates working to understand and navigate life with MED13L. From personal journeys and medical insights to educational tools and research updates, the podcast offers hope, support, and connection for anyone impacted by this rare condition. Whether you're a parent, professional, or simply curious, "The Voices of MED13L" is a space to listen, learn, and stand together in the face of the unknown.

Visit us at www.med13l.org

X: @med13l_fdn

Guest

Ana Fracalossi

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.

Guest appearance on:

Growing Up With MED13L: Life at 11