Maddie’s Spark Foundation Featured in UPMC Children’s Philanthropy Update
Highlighting Hope, Research Progress, and the Future of VLCAD Care
We are honored to share that Maddie’s Spark Foundation and Maddie’s journey were recently featured in the Spring 2026 Philanthropy Update from the Vockley Lab at UPMC Children’s Hospital Foundation. This feature shines a light on the realities families face living with VLCAD deficiency while also highlighting the incredible progress being made in rare disease research, newborn screening, and precision medicine.
For our family, this recognition represents something every VLCAD family deserves: hope.
Advancing VLCAD Research
The Spring 2026 philanthropy report highlights the groundbreaking work of Dr. Jerry Vockley and the Vockley Lab at UPMC Children’s Hospital of Pittsburgh, where researchers are advancing care and treatment options for children living with rare metabolic disorders, including VLCAD deficiency and related LC-FAODs.
One of the most exciting updates involves research aimed at reducing uncertainty in newborn screening results for babies with possible VLCAD deficiency. Researchers developed a faster, less invasive clinical assay that helps determine whether specific genetic variants are disease-causing, helping families receive answers and treatment decisions sooner.
The report also highlighted the Fast PACE Dx Program, which uses rapid whole genome sequencing to help critically ill infants receive earlier diagnoses and more targeted care.
These advancements represent meaningful progress for rare disease families and reinforce why continued research funding is so important.
Maddie’s Journey
Maddie was featured in this philanthropy update to help bring greater awareness to VLCAD deficiency and the realities families face living with rare metabolic disorders.
While VLCAD deficiency is considered rare, its impact on children and families is life-changing. Through Maddie’s story, this feature helps shine a light on the importance of newborn screening, specialized care, rare disease research, and the urgent need for continued progress toward better treatments and a cure.
For many families, rare diseases can feel invisible. Sharing Maddie’s journey helps put a face to VLCAD deficiency while also highlighting the resilience of children living with these disorders and the hope that research is bringing to the rare disease community.
We are incredibly grateful to Dr. Vockley, the Vockley Lab, and UPMC Children’s Hospital of Pittsburgh for helping raise awareness for VLCAD deficiency and for their continued dedication to advancing care and research for families like ours.
Every story shared helps create awareness, inspire action, and bring us one step closer to a brighter future for children affected by VLCAD and related LC-FAODs.
Join the Spark Movement
At Maddie’s Spark Foundation, we believe every child living with VLCAD deficiency and long chain fatty acid oxidation disorders deserve more than just survival. They deserve the opportunity to thrive.
That is why we launched our Be the Spark for VLCAD Research Campaign to help accelerate research with the Vockley lab, raise awareness, and support families affected by VLCAD and related LC-FAODs.
We invite you to join the Spark Movement by becoming a partner, making a donation, or helping us spread awareness for rare disease research.
Every spark of support helps move us closer to better treatments and a cure.
