Maddie's Spark Foundation

09/04/2026

The silent auction for our first Spark-ghetti Dinner is growing, and there are already some incredible items and experiences waiting for you! 🎟️✨

Join us on Saturday, November 14 from 4PM to 8PM at the Findlay Township Activity Center for a family-friendly evening featuring a spaghetti dinner, silent auction, and an opportunity to make a difference for individuals and families living with VLCAD deficiency.

Here’s a look at what you’ll be able to bid on:

🏈 A lithographed photo of Steelers defensive captain Cam Heyward
🏀 Four tickets to a select Pitt Men’s Basketball home game
🤸 An Ultimate Access package from Urban Air – North Fayette
🌸 Four admission passes to Phipps Conservatory
🔬 Two admission passes to Kamin Science Center
🎨 Two admission passes to The Andy Warhol Museum
✨ A custom jewelry piece from Kendra Scott
🎁 A variety of themed baskets filled with goodies

And more silent auction items are still being added!

We are also grateful to Mr. Magic Car Wash our Spark Support Sponsor, for helping us bring this event to our community. Support from local businesses like Mr. Magic helps make the evening possible and allows us to raise more for VLCAD research through our Early SparCK Initiative.

Tickets are $15 for adults and $8 for children 12 and under.

🍝 Purchase your tickets today and join us for an evening that brings our community together for VLCAD research:
https://givebutter.com/c/2026-sparkghetti-dinner

09/02/2026

At just 24 hours old, Maddie experienced an unexplained episode of dangerously low blood sugar.

No one knew why.

Six days later, the Bauer family received the phone call that began connecting the dots.

Maddie’s newborn screening showed that she may have VLCAD deficiency, a rare genetic metabolic disease that prevents the body from properly breaking down certain fats for energy.

Suddenly, that unexplained low blood sugar made sense.

Maddie had looked like a healthy newborn. But without early diagnosis and treatment, she was at risk for another episode of low blood sugar, heart complications, metabolic crisis, coma, or death.

The Bauer family began to realize just how lucky they were that newborn screening provided an answer, and the opportunity to act before another crisis occurred.

✨ Maddie was connected with a metabolic genetics team.
✨ She received confirmatory testing.
✨ Her family began learning how to manage VLCAD and protect her during illness or periods when she could not eat.

Fewer than 100 babies are born with VLCAD deficiency in the United States each year.

Because newborn screening for VLCAD is available in all 50 states, babies with VLCAD deficiency now have the opportunity to be identified shortly after birth, often before their families know anything is wrong.

An out-of-range result is not a final diagnosis. But it can be the first step toward answers, specialized care, and treatment that may help prevent life-threatening complications.

For the Bauer family, newborn screening was more than a test.

It explained what had happened.
It connected Maddie with lifesaving care.
It gave her family the knowledge they needed to protect her.

This Newborn Screening Awareness Month, help Maddie’s Spark Foundation raise awareness of why those few drops of blood matter so much.

Every baby deserves the chance to receive an early diagnosis and the care they need to thrive. 💗✨

Learn more: https://www.maddiesspark.org/newbornscreening

09/01/2026

Okayyyy RISE for LCHAD!! 👏💛🧬

$90,000+ raised this year and at least $70,000 headed directly to LCHAD research!🔬✨

That’s not just a big number. That’s BIG hope for our LC-FAOD kiddos. 💛

Absolutely incredible. Way to RISE! 🙌

💛 What a night. What a community. 💛

Thanks to all of you, RISE for LCHAD has raised more than $90,000 this year, and we anticipate donating at least $70,000 directly to Dr. Jerry Vockley to advance research and treatments for LCHAD.

But the impact is so much more. Over 170 people came together at the Golden Hour Gala—many learning about LCHAD for the first time. More awareness means more hope for every family affected by LCHAD. 🧬✨

To everyone who attended, sponsored, donated, bid, volunteered, contributed an item, or supported RISE: you made this beautiful night possible.

And we’re not done yet! If you donated this year, please check whether your employer offers a matching gift program—your gift to RISE may be eligible to be doubled. Simply search for RISE for LCHAD (or our EIN 41-2835545) in your companies giving portal.

$90,000+ in one year is proof of what can happen when people come together around something that matters!💛🧬

09/01/2026

🚨 RESOURCE ALERT: Financial Assistance is Available for VLCAD Families in the US🚨

We want to make sure every family in our community knows about this. 👇

The Assistance Fund runs a Financial Assistance Program for Long-Chain Fatty Acid Oxidation Disorders, and it's currently open and accepting new patients with broad coverage:

💊 Prescription drug costs (copays, deductibles, coinsurance)
🏥 Health insurance premiums
💉 Therapy administration costs
✈️ Travel to treatment — flights, gas, meals, AND hotel stays
🩺 Specialist visits & diagnostic testing
🧬 Genetic testing

Covered treatments include: Dojolvi, Hemangeol, Inderal LA, InnoPran XL, Propranolol hydrochloride, and Sodium Bicarbonate.

Who qualifies?
✔️ U.S. citizen or permanent resident
✔️ Diagnosed with the condition
✔️ Prescribed an FDA-approved treatment
✔️ Have prescription coverage
✔️ Meet financial eligibility guidelines

📞 Call (855) 951-2674 or enroll directly here:
🔗 https://enroll.tafcares.org/TAF_ProgramInformation?Id=dpPY6tgMyHcbmXF7wyuIqWJ1wEU7eKGb8FwhpT3%2BtTKDLkQiK8usk86GB3eSEiWx

💙 Know a family who could use this? Tag them or share this post. It might be exactly what they need today.

08/31/2026

Dear Mom or Dad,

As you start this week,
We want you to know something…

You’re doing a really good job. 🥰

We know it may not always feel that way.

Living this VLCAD life with our kids
comes with so much that other people
may never see.

The planning.
The worrying.
Watching the clock.
Thinking three steps ahead.
And carrying all of those little “what ifs”
in the back of your mind.

Your kids don’t need you to have
everything figured out.

They just need you to keep showing up.

And you are.

Every time you advocate.
Every time you ask another question.
Every time you prepare, protect,
comfort, encourage, and love them…

You are showing up.

So if you’re starting this week
already feeling a little tired,
give yourself some grace.

You don’t have to take on
the whole week today.

Just take today.

And remember…

You are doing better than you think.
And you are exactly the parent
your child needs. 🤍

We see you.

Keep going.

We’re here to help you on this journey. 💖✨

08/29/2026

🎟️🎶💖 RAFFLE & RHYTHM FOR RESEARCH — WHAT A NIGHT! 💖🎶🎟️

We are still smiling after an AMAZING night at Beck’s Garage 🤠✨ Thanks to this incredible community, we raised $1,400 for VLCAD research! 🧬💗

From the raffles and music to the silent auction, the night was filled with fun, laughter, generosity, and so much love for Maddie’s Spark.🔥💕

A HUGE shoutout to Bob Browning & Double Barrel for not only bringing the music, but for letting Isla steal the show!🌟🎤 Her personality was on FULL display, and can we please talk about that pink cowboy hat?!🤠🩷 Absolutely PERFECT. She was made for the spotlight!

And most importantly, THANK YOU to every single person who came out, bought raffle tickets, bid in the silent auction, donated, cheered, danced, sang along, and supported Maddie’s Spark. 🫶

Events like this remind us just how powerful a community can be when we come together for a cause that means so much.

$1,000 raised. One unforgettable night. And a whole lot of SPARK!✨🔥

Thank you, thank you, THANK YOU for helping us keep Maddie’s Spark shining bright and supporting the fight for VLCAD research! 💗🧬

08/27/2026

We are proud to see Dr. Jerry Vockley recognized by the American College of Medical Genetics and Genomics for his continued leadership in medical genetics and rare disease care. 💗✨

Dr. Vockley’s investment in the VLCAD deficiency and fatty acid oxidation disorder community has helped move the field forward from advancing C7 therapy to developing gene therapies and exploring an at-home continuous CK monitoring device that would give families better tools to recognize muscle damage and metabolic crises earlier.

Through our continued partnership with Dr. Vockley and his team at UPMC Children’s Hospital of Pittsburgh, Maddie’s Spark Foundation is honored to help support research focused on improving disease management, expanding treatment options, and changing what the future can look like for individuals living with VLCAD and other FAODs.

Thank you, Dr. Vockley, for the decades of knowledge, leadership, and determination you continue to invest in our community. Your work gives VLCAD families more than hope. It gives us a path forward.

Continuing our series highlighting the dedicated leaders on our Board of Directors helping to shape the future of …

This spotlight features Jerry Vockley, MD, PhD, FACMG, an ACMG Board member since 2021 and Founding Fellow of the College. He serves as Chief of the Division of Genetic and Genomic Medicine and Director of the Center for Rare Disease Therapy at the UPMC Children's Hospital of Pittsburgh and is the Cleveland Family Endowed Professor in Pediatric Research at the Pitt School of Medicine.

Thank you, Dr. Vockley, for your leadership and continued service to ACMG and our members. Learn more: https://tinyurl.com/JV26BS

08/25/2026

Check out our friends RISE for LCHAD silent auction! Their upcoming Gala and silent auction will benefit Dr Vockley’s research for fatty acid oxidation disorders at UPMC Children’s Hospital of Pittsburgh! 💖✨

By RISE for LCHAD

08/25/2026

🎒🍎✨ Look out, Kindergarten. Here comes Maddie!

Today was Maddie’s very first day of Kindergarten, and it was a BIG milestone for the Bauer family! Getting her ready took much more than choosing a new backpack and buying school supplies. There were meetings, emergency plans, more meeting, lots of conversations with the school nurse, did we mention meetings, and plenty of preparation to make sure she could start school safely and confidently with VLCAD.

First days bring all the feelings. Excitement, pride, nerves, happy tears, and maybe a few “How are they already this big?” moments. To every parent sending a child off on a new adventure, we’re sending lots of love and good vibes your way! 💗✨

Now it’s your turn! Did your VLCAD warrior start preschool, Kindergarten, a new grade, college, or another exciting chapter?

📸 Drop a photo in the comments and tell us what milestone they’re celebrating! You can also email your photo and story to [email protected].

Let’s fill the comments with smiling faces, new backpacks, and celebrate our VLCAD warrior milestones! 📚✏️✨