Maddie's Spark Foundation

11/03/2026

🍝 Come for the spaghetti. Stay because someone just outbid you.

Join Maddie’s Spark Foundation for our first Spark-ghetti Dinner! Bring the family or make it a night out with friends. We’d love to see you around the table. 💗

📅 Saturday, November 14 | 4–8 PM
📍 Findlay Township Activity Center
310 Main Street, Imperial, PA
🎟️ Adults $15 | Children 12 & under $8
🍝 Includes spaghetti, meatballs, salad, bread, dessert, and drinks from Cooked Goose Catering

Get your tickets today:
https://givebutter.com/c/2026-sparkghetti-dinner
Advance purchase recommended. It helps us plan for dinner!

See something you’d bid on? 👀
🏈 Pittsburgh Steelers Cam Heyward lithograph
💙💛 Pitt basketball ticket package
🎟️ Outings to Phipps Conservatory, the National Aviary, Kamin Science Center, and more
✨ Kendra Scott jewelry
🎁 $250 Levin Furniture and Mattress gift card with holiday décor
🏠 A Roomba and home cleaning bundle
🎉 Birthday party basket, including $150 gift certificate to Bounce Town 412

🍪 And a sweet thank you Eat'n Park for providing Smiley Cookies!

100% of proceeds from ticket sales and the silent auction support VLCAD research at UPMC Children’s Hospital of Pittsburgh. Your evening out will help advance research into better monitoring tools and future treatments for families living with VLCAD.

We’re also excited to welcome Dr. Jerry Vockley, an internationally recognized leader in VLCAD research!

Thank you to our generous sponsors for helping make this evening possible:

💗 Spark Support Sponsors
Mr. Magic Car Wash • Amy’s Pet Parlor

💛 Spark Friend Sponsors
Utz Snacks • Advanced Dentistry Ameredes & Associates • Nemacolin • The Waugaman Family • Washington Honda

Can’t make it? You can donate through the same link.

Send this to your dinner crew and make those plans!🎉

11/02/2026

A day without a medical crisis can still be a day full of caregiving. 💗✨

It’s the food prepared before leaving home. The multiple calls to insurance or the pharmacy. The instructions shared with school. The planning that helps someone with VLCADD enjoy an ordinary day.

November is National Family Caregivers Month, and we’re recognizing the parents, stepparents, spouses, partners, grandparents, siblings, and loved ones doing this often invisible work.

Our latest blog explores how a diagnosis can suddenly bring responsibilities families never expected and shares resources for connection, financial assistance, and caregiver support.

🔗Read it here:
https://www.maddiesspark.org/spark-stories/the-invisible-work-of-caring-for-someone-with-vlcadd

✨What’s one thing you wish more people understood about caregiving for a loved one with VLCADD?

11/02/2026

Australian VLCAD families, this opportunity is for you. 🇦🇺💖

What would you want people making decisions about treatments to understand about your family’s life?

Mito Stories Project is inviting people living with VLCAD and other LC-FAODs, parents, and carers to share their experiences and hopes for emerging therapies.

Your story can help inform advocacy for treatment access in Australia. We want families to have a voice in those conversations, including around therapies such as triheptanoin (DOJOLVI). ✨

💬 One interview, usually 30–40 minutes
📱 By phone or video
💖 Your story can be shared anonymously

Learn more and register your interest through the Mito Stories link in our bio or Story.

Please send this to an Australian family who might want to take part. Their experience matters, too.

If you need more information or someone to talk to, you can call our Helpline on 1300 977 180, or email us at [email protected].

10/31/2026

🎃 Happy Halloween from Maddie’s Spark Foundation! 💖

Wishing our Spark families and followers a Halloween filled with fun, sweet moments, and costumes that make you smile! Whether you’re trick-or-treating or celebrating at home, we hope you have a wonderful night. 👻✨

Looking for fat-free or low-fat candy ideas? Here are a few options for your treat bowl!

🍬 Options labeled 0g fat per serving:
• Smarties original candy rolls
• Dum Dums original lollipops
• DOTS original gumdrops
• Jolly Rancher original hard candies
• Sour Patch Kids original soft & chewy candy
• Swedish Fish original soft & chewy candy
• Life Savers 5 Flavors hard candies

🍬 A low-fat option:
• Twizzlers strawberry twists

💖 Always check the specific package’s nutrition facts, ingredients, and serving size. For families managing VLCAD or another LC-FAOD, choose treats that fit your child’s individual nutrition plan, age, and chewing abilities.

Now we want to see YOUR costumes! 🎭🧡 Drop a photo in the comments. Grown-ups and furry friends count, too! 🐾

10/30/2026

Maddie has a little reminder for you… get your Spark-ghetti tickets! 🍝💖

Our Spark-ghetti Dinner is two weeks away, and we still have seats to fill!

Join us November 14 for dinner benefiting VLCAD research at UPMC Children’s Hospital of Pittsburgh. For Maddie and other families living with VLCAD deficiency, this research will give them opportunities for better disease management tools and a gene therapy cure!

So send that text to your friends, invite the grandparents, and make a night of it. We’d love to have you with us! ✨

🍝 Saturday, November 14 | 4 PM to 8 PM
📍 Findlay Township Activity Center, 310 Main Street, Imperial, PA
Findlay Township Parks and Recreation

🎟️ Buy your tickets here:
https://givebutter.com/c/2026-sparkghetti-dinner

Already have yours? Tell us who’s coming with you! Sharing this post helps us reach more people, too. 💖

10/30/2026

When someone asks you if making a donation to rare disease research really makes an impact, tell them to check out Sawyer’s Race for Research story! Their recent donation was able to kickstart the next step for a gene therapy for TFP 👏👏

10/29/2026

What helped you feel a little more confident caring for your child after their VLCAD deficiency diagnosis? 💖

Maybe it was another parent answering your questions. A care team who took time to explain things. Or someone saying, “You can call me when you need to talk.”

For International Day of Care and Support on October 29, we’re thinking about what it takes to build support families can count on, not just at diagnosis, but as their needs change.

That’s part of our mission at Maddie’s Spark Foundation. Whether your family is newly diagnosed or years into life with VLCAD, we want you to have access to resources, connection, and encouragement that help you feel informed and empowered to care for your child or loved one.

✨ What support has made the biggest difference for your family, or what do you wish had been available?

Share what you’re comfortable sharing below. We want to hear from you.

Explore our resources and support at www.maddiesspark.org. 💖

10/28/2026

VLCAD families! What would being able to check CK at home mean for you? 💖

We know how much families want better tools to help manage VLCAD. Part of our work at Maddie’s Spark is keeping you connected to research, new technology, and opportunities to have a say in what’s being developed.

Several CK monitors are in the works, and we’re rooting for progress across all of them. We want to see these tools get into the hands of families who need them. ✨

One project we’re sharing today comes from a fellow VLCADD dad, Jake Bair, PhD. He’s developing a wearable CK monitor, a small patch intended to measure CK, a marker of muscle breakdown, without blood draws.

It’s still early in development, and Jake wants to hear from families. What would make a monitor useful to you? What concerns would you have? Your experience can help guide his work.

💖 Take the family survey: https://docs.google.com/forms/d/e/1FAIpQLScMaMWFXJRAZvabmqOMbbj9kyNQ9vyg6o8U5vpuc-7jLTr_uQ/viewform

Questions about the project? Reach out to Jake at [email protected].

10/20/2026

📣 VLCAD families and rare disease advocates! There’s still time to request a chance to speak!

The U.S. Food and Drug Administration is seeking input on its Rare Disease Framework Initiative to help shape how rare disease treatments are developed and reviewed. Families have an important perspective to bring: what living with a rare disease looks like and what we need from future treatments. 💗

⏰ The deadline to request a virtual public comment spot is TODAY, October 20, at 5 p.m. ET. Request your spot when registering.

📅 Meeting: October 28 | 1–5 p.m. ET
💻 Virtual attendance is available, and you can register just to listen.

👉 Learn more and register:
https://reaganudall.org/news-and-events/events/rare-disease-framework-public-meeting

Please share so more families have the opportunity to participate!