2026
VLCAD Deficiency Awareness Day
July 17 is VLCAD Deficiency Awareness Day. This annual day raises awareness about this rare metabolic disease, honors families affected by VLCAD deficiency, and fuels research toward better treatments and a cure.
Share Your Spark on July 17
Join Maddie's Spark Foundation on July 17, 2026, for the first annual VLCAD Deficiency Awareness Day. Our Be the Spark campaign is dedicated to increasing awareness of VLCAD deficiency, building understanding and support for affected families, and accelerating innovative research that can improve disease management, treatment options, and quality of life for those living with this rare disease. Together, we aim to generate 717 sparks of awareness by encouraging individuals, families, organizations, healthcare professionals, and advocates to share a post, tell their story, or take action on July 17.
SHARE YOUR
SPARK
SUPPORT VLCAD
RESEARCH
ADVOCATE FOR
AWARENESS
INSPIRE YOUR
COMMUNITY
What is VLCAD Deficiency?
VLCAD deficiency is a rare genetic metabolic disorder that affects how the body converts long chain fats into energy. Families living with VLCAD often face strict daily management, emergency precautions, hospitalizations, and ongoing uncertainty. Increased awareness and research are critical to improving care, outcomes, and quality of life for affected children and families.
Why July 17 Matters?
VLCAD Deficiency Awareness Day was created to bring visibility to a rare genetic metabolic disorder that too few people know about while uniting families, advocates, physicians, and researchers around a shared mission. July 17 is a day to raise awareness, inspire action, honor the VLCAD community, and help fuel research toward better treatments and a brighter future.
How Can I Be a Spark?
You can help make an impact by raising awareness, sharing your story, supporting VLCAD research, starting a fundraiser, or making a donation in honor of VLCAD Deficiency Awareness Day. Every shared post, fundraiser, conversation, and contribution helps shine a light on VLCAD deficiency while creating hope, support, and progress for affected children and families.
Every VLCAD journey is unique. Some children experience mild symptoms. Others face frequent hospitalizations, ongoing medical complications, and significant daily challenges. Yet across every story, there is a common thread: resilience.
These children are more than their diagnosis. They are explorers, athletes, siblings, students, dreamers, and advocates. They remind us that while VLCAD deficiency may be rare, the strength of this community is extraordinary.
For VLCAD Deficiency Awareness Day, we're honored to share the stories of four incredible children living with VLCAD deficiency. Their journeys remind us why awareness matters, why research matters, and why we continue to fight for a brighter future for every family affected by VLCAD deficiency.
Families Are the Reason We Fight for Research
Maddie, age 5
Ezra, age 2
Isla, age 3
Violet, age 7
Be the Spark Campaign Resources
#BetheSpark4VLCAD
#ShareYourSpark
#VLCADAwarenessDay
Visit our VLCAD Deficiency Awareness Day Resource Library to download, customize, and share materials that help spread awareness and support the VLCAD community. Click on the graphics below to personalize resources and participate in the #BeTheSpark4VLCAD campaign. Questions? Contact us at ashley@maddiesspark.org.
DOWNLOAD OUR
BE THE SPARK TOOLKIT
Official Recognition for
2026 VLCAD Deficiency Awareness Day
We are honored to have VLCAD Deficiency Awareness Day recognized through an official proclamation from:
Allegheny County, Pennsylvania
Allegheny County, Pennsylvania