Maddie's Spark Foundation

06/15/2026

💙 We’re excited to share that our friends at Sawyer’s Race for Research have announced their upcoming 5k race!

As fellow rare disease advocates, we know how important community support is in helping advance research and create hope for families affected by fatty acid oxidation disorders (FAODs), including VLCAD deficiency and TFP.

If you're looking for a meaningful way to make a difference, consider joining them on September 26 in Bowling Green, KY. Whether you run, walk, volunteer, sponsor, or simply help spread the word, every effort helps move rare disease research forward.

Please take a moment to check out their event and show your support for this incredible mission. 💙

Mark your calendars: we’ve got a 5K to run! 🎉

Sawyer’s Race for Research is back in Bowling Green on September 26, 2026, and this year’s course is going to be a fun one! Whether you’re a seasoned runner or more of a “I’ll walk and cheer people on” kind of person, we want you there.

Here’s why it matters: Children with Trifunctional Protein Deficiency, like Sawyer, can’t properly convert certain fats into energy. During illness, fasting, or even everyday stress, their bodies can run out of usable fuel while toxic fats build up. The effects can hit the heart, liver, muscles, brain, and eyes…and they can become life-threatening fast.

Managing TFP means constant vigilance, careful nutrition, and immediate treatment when things go wrong.

There is no margin for error. And there is no cure yet.

That’s exactly why this race exists. Every dollar raised goes directly toward the scientific research that could change everything for kids like Sawyer.

Follow along for updates on how to register, volunteer, sponsor, and be a part of this vital mission. We can’t wait to see you on the course. 💙

06/05/2026

This weekend, Maddie turns 5. 💗
Five years of strength.
Five years of resilience.
Five years of showing us what it means to keep moving forward, no matter the obstacles.

Watching Maddie break this board and earn her new belt is a reminder that strength isn’t measured by the challenges we face—it’s measured by the courage to keep going.

Maddie is the inspiration behind Maddie’s Spark Foundation, and her journey continues to fuel our mission to raise awareness, support families, and accelerate research for VLCAD deficiency and related fatty acid oxidation disorders.

Today, we’re celebrating not just a birthday, but the spark that started it all. ✨

Join us in wishing Maddie a very Happy 5th Birthday in the comments! 🎂💗

05/28/2026

Great opportunity for families with VLCAD deficiency and related FAOD to connect and learn the latest on research and treatment options!

SAVE THE DATE! Join us virtually this summer for the 2026 International Metabolic Conference July 25th-July 26th! Whether you are new to the FAOD community, a family member, caregiver, adult patient, or friend; there is something for everyone. Stay tuned for registration coming soon, and join us for a weekend of learning, connecting, and supporting our FAOD community. Click the link to learn more about this incredible conference. https://www.mitoaction.org/events/internationalmetabolicconference/

05/25/2026

Memorial Day is more than a long weekend or the start of summer. It’s a day to pause and remember the brave men and women who gave their lives serving our country. 🇺🇸

Today, we honor those heroes and the families who carry their memories every single day. Their sacrifice is the reason we have the freedoms we often take for granted.

At Maddie’s Spark Foundation, we remember, we honor, and we are forever grateful.

Never forgotten. ❤️🤍💙

05/24/2026

This June, Maddie is celebrating 5 years of strength, resilience, and courage while navigating life with VLCAD deficiency.

Behind every rare disease diagnosis is a child learning how to navigate a world that looks different for them.

To celebrate this milestone, Maddie’s Spark Foundation is raising $5,000 to help support VLCAD research and awareness for children and families affected by rare metabolic disorders.

Research creates hope for kids like Maddie ✨

💗 Help us celebrate 5 years of spark.

✨ Support Maddie’s Birthday Campaign. Donate Here: https://givebutter.com/maddie-xrnhrb

Donate to support VLCAD deficiency research, rare disease awareness, and family support through Maddie’s Spark Foundation, a 501(c)(3) nonprofit.

05/24/2026

Opportunity for incoming college students! Scholarship specifically for those affected by mitochondrial disease

Don’t miss out! The application deadline for the Matthew Harty Camper Fund Scholarship is coming up on May 31st. This incredible scholarship opportunity helps individuals affected by mitochondrial disease attend college and work towards their career dreams. Visit our website to learn more and submit your application before the deadline: https://buff.ly/zmtIqUZ

05/24/2026

Great opportunity for an in person gathering for FAOD families in the Ohio area!

Send a message to learn more

05/19/2026

💡

What part of the body can VLCAD deficiency affect?

A. Muscles
B. Heart
C. Liver
D. All of the above

👇 Share your guess in the comments before checking the answer.

From emergency hospitalizations to constant monitoring during illness, VLCAD impacts far more than just energy levels.

💗 Learn more about VLCAD deficiency and why awareness matters:
https://www.maddiesspark.org/understandingvlcad

📲 Share this post to help spread awareness for rare metabolic disorders.

05/18/2026

Don’t miss tomorrow’s important conversation on advancing rare disease treatment development and how YOU can help!

NORD recently joined a Citizen Petition encouraging the U.S. Food and Drug Administration (FDA) to support more flexible, fit-for-purpose approaches to evaluating rare disease treatments, recognizing that traditional clinical trial models do not always reflect the realities of small patient populations.

Patients, caregivers, advocates, and organizations all have an opportunity to learn more and support this effort. Join NORD tomorrow, May 19 at 3 p.m. ET for a webinar exploring what this Citizen Petition could mean for the rare disease community and how your public comments can help amplify support.

Register today: https://bit.ly/3RjsSGL