2027 Be the Spark VLCAD Deficiency Awareness Day Celebration
Join Maddie’s Spark Foundation’s first annual Be the Spark Celebration, a family-friendly community event bringing people together to celebrate our VLCAD Warriors, raise awareness of VLCAD deficiency, and help fund research for a cure.
JULY 17 IS FOR VLCAD Deficiency Awareness
July is Fatty Acid Oxidation Disorders (FAOD) Awareness Month, but for years, VLCAD deficiency did not have an awareness day of its own.
In 2026, Maddie’s Spark Foundation established July 17 as VLCAD Deficiency Awareness Day because VLCAD is caused by changes in the ACADVL gene, located on chromosome 17. July 17 is now a day for us to recognize our VLCAD Warriors, share their stories, help more people understand this rare disease, and keep pushing toward better treatments and a cure. And in 2027, we’re bringing that mission home to Pittsburgh where exciting innovative research is happening at UPMC Children’s Hospital!
MEET OUR VLCAD WARRIORS
The Be the Spark Celebration is about the people and families living with VLCAD every day. Throughout the event, we want our community to meet our VLCAD Warriors, learn their stories, and better understand the rare disease we are working together to change. VLCAD Warriors joining us in Pittsburgh will receive free registration for the 17 Minutes for VLCAD Family Walk, an event T-shirt, and the opportunity to lead the Walk at 11:17 AM.
Help us Recognize VLCAD Warriors Around the Globe. We want to represent VLCAD Warriors in the United States and beyond, including those who can't be with us in person. We're inviting VLCAD families to send us a photo or share a little about their Warrior to be included in our VLCAD Story Walk at Donaldson Park. Their photos and stories will help introduce our community to the real people behind VLCAD and remind everyone walking with us exactly why this day matters.
Have a VLCAD Warrior you'd like us to recognize? Share your story or send us a photo by emailing Ashley Bauer at ashley@maddiesspark.org.
17 MINUTES FOR VLCAD
At 11:17 AM, our VLCAD Warriors will lead our community in the 17 Minutes for VLCAD Family Walk.
For 17 minutes, families, friends, neighbors and supporters will walk together in honor of July 17 and the individuals around the world living with VLCAD deficiency.
Along the route, our VLCAD Story Walk will introduce you to the people behind this rare disease. You'll learn what VLCAD is, what daily life can look like, why metabolic crises can be so serious, where research is headed, and meet some of the VLCAD Warriors you're walking alongside. The Walk is designed for everyone, children, grandparents, families with strollers and participants of all abilities.
Register by June 17, 2027 to guarantee your t-shirt size!
Walk registration will include an official 2027 Be the Spark Celebration T-shirt. Registration Coming Soon!
THERE'S SOMETHING FOR THE WHOLE FAMILY
The Be the Spark Celebration is a free, family-friendly community festival in the Pittsburgh, PA area, bringing together family fun, VLCAD awareness, and fundraising for research. Enjoy Touch-A-Truck, food trucks, local vendors, raffles, the 17 Minutes for VLCAD Family Walk, and more. General admission is free, with separate registration required for the 17 Minutes for VLCAD Family Walk and a $5 Spark Kids Zone wristband for inflatables and select kids activities.
WANT TO GET INVOLVED?
Help us bring the 2027 Be the Spark Celebration to life! Maddie’s Spark Foundation is looking for Pittsburgh-area businesses, vendors, volunteers and community partners to join us on July 17 at Donaldson Park in North Fayette Township. There are plenty of ways to Be the Spark while helping raise awareness and funds for VLCAD research.
Become an Event Sponsor
Partner with Maddie’s Spark Foundation as a Be the Spark Celebration sponsor and help support VLCAD research while connecting your business or organization with families throughout the Pittsburgh community. Contact Ashley at ashley@maddiesspark.org to learn about current Event sponsor opportunities.
Become an Event Vendor
We’re inviting local businesses, makers, nonprofits and community organizations to join our Vendor & Community Village at Donaldson Park.
Volunteer at Be the Spark
Looking for a way to volunteer in the Pittsburgh area? Join us to help with the Family Walk, Spark Kids Zone, raffles, registration, event setup and more.
Donate to the Event
Businesses and community members can support the fundraiser by donating raffle baskets, gift cards, prizes, cakes, event supplies and other in-kind donations. Contact Ashley at ashley@maddiesspark.org to learn about current Event sponsor opportunities.