We're Making History: Join Us for the First-Ever VLCAD Deficiency Awareness Day
On July 17, something pretty incredible is happening.
Families, advocates, healthcare professionals, researchers, friends, and supporters from around the world will come together for the first-ever VLCAD Deficiency Awareness Day.
And we'd love for you to be part of it.
At Maddie's Spark Foundation, we launched VLCAD Deficiency Awareness Day because awareness has the power to change lives. It helps families feel seen. It helps communities better understand rare diseases. And it helps fuel the research that can change what's possible for those living with VLCAD deficiency.
Whether you've been living with VLCAD for years, recently received a diagnosis, work in healthcare, or simply want to support a cause that matters, there is a place for you in this movement.
First Things First... What is VLCAD Deficiency?
VLCAD (Very Long-Chain Acyl-CoA Dehydrogenase) deficiency is a rare genetic metabolic disorder that affects how the body turns certain fats into energy.
For individuals living with VLCAD, everyday things like illness, fasting, physical activity, or even a growth spurt can create serious medical challenges.
The condition can affect the muscles, heart, and liver and may lead to severe muscle breakdown, low blood sugar, and life-threatening metabolic crises.
While VLCAD is identified through newborn screening, there is still no cure. Families spend countless hours managing the condition, preventing complications, and navigating a future filled with more questions than answers.
That's exactly why awareness matters.
Why July 17?
The date wasn't chosen at random.
The gene responsible for VLCAD deficiency, ACADVL, is located on Chromosome 17, making July 17 (7/17) the perfect day to shine a spotlight on this rare disease and the incredible community behind it.
Our goal for this inaugural year is simple:
717 Sparks Shared around the world.
Every social media post, story, conversation, photo, and share helps introduce VLCAD deficiency to someone who may have never heard of it before.
And that's how awareness grows.
How You Can Be the Spark
One of the most meaningful ways to participate is through our "My Spark Is..." campaign.
Tell us what inspires you to support VLCAD awareness by completing the sentence:
My spark is __________ because __________.
Maybe your spark is your child.
Maybe it's a family member.
Maybe it's newborn screening.
Maybe it's hope for better treatments.
Or maybe it's the researchers working tirelessly behind the scenes to improve outcomes for VLCAD families.
Whatever your spark may be, we want to hear it.
When you post, don't forget to tag us and use:
#BeTheSpark4VLCAD
#ShareYourSpark
#VLCADAwarenessDay
Wear Your Spark
One of the easiest ways to show your support is by wearing your spark.
To celebrate the inaugural VLCAD Deficiency Awareness Day, we've created official awareness shirts that help spread awareness while supporting something even bigger.
100% of the proceeds from every shirt sold will directly support VLCAD research efforts led by Dr. Jerry Vockley and his team at UPMC Children's Hospital of Pittsburgh.
Whether you wear your shirt on July 17, to a community event, at school, at work, or simply around town, you'll be helping start conversations about a disease that most people have never heard of.
Help Spread the Word
Awareness starts with education.
Share a VLCAD fact. Repost campaign content. Invite friends and family to participate. Encourage your workplace, school, hospital, or community organization to get involved.
Every share helps us reach someone new.
To help supporters get involved, we've created a full Awareness Day Toolkit packed with free resources, including:
✨ Social media graphics
✨ Share Your Spark templates
✨ Educational VLCAD resources
✨ Facebook cover photos
✨ LinkedIn banners
✨ Profile frames
✨ Sample captions
✨ Awareness Day flyers
Whether you're an individual supporter or representing an organization, you'll find everything you need to participate.
Visit MaddiesSpark.org/VLCADAwarenessDay to download resources, access the toolkit, and learn more about how you can get involved.
Download our VLCAD Deficiency Awareness Day Toolkit here.
Support the Early SparCK Initiative
Awareness is important. But awareness alone isn't enough.
That's why Maddie's Spark Foundation launched the Early SparCK Initiative, a fundraising campaign dedicated to accelerating research that could transform how VLCAD is managed at home.
Today, families often wait hours, or even days, to know whether dangerous muscle breakdown is occurring. During a metabolic crisis, that delay can make all the difference.
Through the Early SparCK Initiative, we are supporting Dr. Jerry Vockley and his research team at UPMC Children's Hospital of Pittsburgh as they work to advance an emerging at-home continuous CK monitoring and disease management device toward clinical trials.
This technology has the potential to transform how individuals living with VLCAD deficiency and related fatty acid oxidation disorders manage their condition at home. By providing earlier insight into dangerous muscle breakdown, families and clinicians may be able to respond more quickly during metabolic crises, make more informed disease management decisions, reduce delays in emergency care, and ultimately improve long-term health outcomes and quality of life.
For VLCAD families, this isn't just a research project. It's a potential game changer.
If you're looking for another way to participate in VLCAD Deficiency Awareness Day, consider making a donation to support the Early SparCK Initiative and help move this promising technology closer to the families who need it most.
Why This Day Matters
For many families, VLCAD deficiency can feel invisible.
Most people have never heard of it. Many don't understand the daily planning, medical management, and uncertainty that comes with living with a rare metabolic disorder.
Awareness helps change that. It helps families feel less alone. It helps communities become more informed. It helps connect researchers, clinicians, advocates, and supporters.
And it helps build momentum for the research that will shape the future of VLCAD care.
Help Us Reach 717 Sparks
This year, we're inviting our entire community to help us reach a goal of 717 Sparks Shared in honor of July 17.
Whether you share a post, tell your story, wear your awareness shirt, support research through the Early SparCK Initiative, or simply help start a conversation, you are helping build something bigger than a single day.
You're helping build awareness. You're helping fund research. You're helping create hope.
So mark your calendar for July 17.
Share your spark. Invite others to join you. And help us make history.
Because every movement starts with a spark.
