100% of proceeds from the Early SparCK Initiative will directly support research efforts led by Dr. Jerry Vockley at UPMC Children's Hospital of Pittsburgh to help advance an emerging at-home continuous CK monitoring and disease management device toward clinical trials for individuals living with VLCAD deficiency and related fatty acid oxidation disorders.

About Maddie's Spark Foundation

Maddie’s Spark Foundation is a 501(c)(3) nonprofit organization dedicated to advancing awareness, supporting research, and helping create a better future for individuals and families affected by VLCAD deficiency and related long-chain fatty acid oxidation disorders (LC-FAOD).

Founded by parents who understand the challenges of navigating a rare metabolic disorder, we believe families deserve more than uncertainty and limited treatment options. Through research funding, awareness, advocacy, and community support, we are working to accelerate scientific progress and create hope for current and future generations living with VLCAD and LC-FAOD.

Early SparCK Initiative

The Early SparCK Initiative was launched by Maddie’s Spark Foundation in 2026 to raise $100,000 to help advance an emerging at-home continuous Creatine Kinase (CK) monitoring and disease management device toward clinical trials through research efforts connected to Dr. Jerry Vockley at UPMC Children’s Hospital of Pittsburgh.

CK is a protein found in the muscles and the heart that serves as an important indicator of health in individuals living with VLCAD deficiency and LC-FAOD. Elevated CK levels can signal muscle damage and may indicate that a serious metabolic crisis is developing.

This first-of-its-kind disease management technology will help individuals and families manage CK levels at home, providing real-time information that can support earlier intervention, more informed treatment decisions, and improved disease management.

The CK monitor and disease management device will help families and clinicians:

Identify dangerous muscle breakdown changes earlier
Respond faster during metabolic crises
Improve disease management and treatment decisions at home
Reduce delays in emergency care
Support safer long-term outcomes and quality of life

This technology will transform how VLCAD deficiency and related LC-FAOD are managed both at home and in clinical settings.

Why Funding for VLCAD Research is Needed

VLCAD deficiency is one of six rare LC-FAOD, affecting approximately 1 in 85,000 births. First identified in 1992, individuals living with VLCAD deficiency still face daily life-threatening complications affecting the heart, muscles, liver, and kidneys, while families continue navigating limited treatment options and daily medical uncertainty.

As a rare disease, VLCAD deficiency and LC-FAOD research remains significantly underfunded, and recent federal grant funding cuts have further slowed progress toward emerging technologies, improved disease management tools, and future clinical trials.

Maddie’s Spark Foundation is helping change that by supporting research efforts connected to Dr. Jerry Vockley, an internationally recognized leader in rare metabolic disorders whose work is helping advance promising breakthroughs for individuals and families living with VLCAD deficiency and related LC-FAODs.

Advancing Research through Collaboration

Maddie’s Spark Foundation proudly supports research efforts connected to Dr. Jerry Vockley at UPMC Children's Hospital of Pittsburgh, an internationally recognized leader in rare metabolic disorders and one of the world's foremost experts in fatty acid oxidation disorders (FAOD), including VLCAD deficiency. Throughout his career, Dr. Vockley’s research has helped advance the understanding, diagnosis, management, and treatment of these rare disorders, improving care for individuals and families around the world. His work has contributed to major advancements in newborn screening, clinical care, dietary management, and the development of emerging therapies for long-chain fatty acid oxidation disorders.

Today, Dr. Vockley continues to lead innovative research focused on improving disease management, advancing new treatment approaches, exploring gene therapy and other emerging technologies, and developing tools that may improve quality of life and long-term outcomes for individuals living with VLCAD and related FAOD. Families from across the globe seek care through his program, and his continued commitment to research is helping create a future with better treatments, better tools, and ultimately the possibility of a cure for fatty acid oxidation disorders.

How Your Support Makes an Impact

Your partnership directly supports the Early SparCK Initiative, helping fund research efforts advancing an at-home CK monitoring and disease management device toward clinical trials for individuals living with VLCAD and related LC-FAOD. Contributions help fund scientists, laboratory technicians, research fellows, testing supplies, and infrastructure needed to keep this work moving forward each day. Your support helps accelerate technology designed to help families and clinicians identify dangerous muscle breakdown changes earlier, respond faster during metabolic crises, and improve disease management and quality of life for individuals living with these rare diseases. Every investment helps move this promising innovation closer to real-world patient impact.

Early SparCK Initiative

Help advance an at-home Creatine Kinase (CK) monitoring and disease management device toward clinical trials