Learn how a severe rhabdomyolysis episode and a CK level over 30,000 shaped a family's journey with VLCAD deficiency. This story explores the challenges of emergency care for rare disease families, the importance of patient advocacy, and how research initiatives like Early SparCK could help improve disease management and outcomes in the future.

Long before VLCAD deficiency became part of newborn screening programs, many individuals lived for years—or even decades—without knowing they had a rare metabolic disorder. Some experienced symptoms throughout childhood and adulthood. Others didn't receive a diagnosis until a serious medical event finally led doctors to search for answers.

Join us on July 17 for the first-ever VLCAD Deficiency Awareness Day. Learn how you can share your spark, support groundbreaking VLCAD research, and help raise awareness for families living with this rare disease.

Every VLCAD journey is unique.

On July 17, VLCAD Deficiency Awareness Day, we invite you to learn more, share these stories, and help support awareness, advocacy, and research that can improve the lives of families living with VLCAD and other long-chain fatty acid oxidation disorders.

During Mental Health Awareness Month, Maddie’s mom shares the emotional reality of raising a child with VLCAD deficiency from medical trauma and caregiver burnout to the invisible mental load rare disease parents carry every day. This personal story explores fear, grief, resilience, and the importance of finding support and community through the hardest moments.

Maddie’s Spark Foundation and Maddie’s VLCAD journey were featured in the Spring 2026 UPMC Children’s Hospital Foundation philanthropy update highlighting rare disease research, newborn screening advancements, and hope for families affected by VLCAD deficiency.