Soaring Together

Jillian is a podcast host, children's book author, rare disease advocate, and speaker. She is a wife and mother to two incredible children, Roman and Stella, who both live with an ultra-rare and life-limiting genetic disorder, ASMD (Acid Sphingomyelinase Deficiency, also known as Niemann-Pick Disease Type A/B). Driven by her family's journey, Jillian launched her podcast, Confessions of a Rare Disease Mama, in 2021 to support and uplift other families facing similar diagnoses.In November 2024, she published her first children's book, Soaring Together, which introduces young readers to disabilities and the power of inclusivity. Jillian also actively supports medical research, serving on the Research Participant Advisory Committee for her local children's hospital, and she's a member of both the Genomic Information Commons Patient Advisory Panel and the Family Support and Assistance Committee for the National Niemann-Pick Disease Foundation.A passionate storyteller, Jillian shares her family's journey on social media, inspiring and connecting with other parents navigating the challenges of raising rare diseases children. She understands the shock and heartbreak of a rare disease diagnosis and encourages families to find light, hope, and beauty beyond the initial darkness.