RISE for LCHAD

06/27/2026

The kids had their first lemonade stand today🍋🍋 They were only out for about 25 minutes before the rain and raised over $250!! More Lemons for LCHAD later this summer 💛💛

06/09/2026

The Fueling Hope Gala is less than three months away!!! We have received so much amazing support and here’s a sneak peek at a few auction items. Thank you so much to Gail and Murray Schur for the gorgeous, handblown wine glasses and to Bill Brumbach for the small batch and single barrel bourbon!!

06/01/2026

Want to follow our journey?

Join the RISE for LCHAD mailing list for updates on research, fundraising, family stories, and ways to make a difference.

https://riseforlchad.com/subscribe

Helping families affected by LCHAD through research, support, and education. Join us in fueling hope and making a difference.

05/20/2026

A great way to help us build momentum is through employer matching gift programs 🥂

A lot of companies will match donations made to nonprofits like RISE, allowing your gift to be doubled or tripled at no extra cost to you!

If your company has a matching program, we’d love for you to sign us up to make an even bigger impact. Please let us know if you need any specific information about RISE or help with the sign up process 💛💛

05/12/2026

Most people have never heard of LCHAD. Neither had we — until our daughter Jillian was diagnosed at birth.

It's a rare metabolic disorder with almost no public funding. So we decided to do something about it.

We started RISE for LCHAD. On August 28th, we're hosting Fueling Hope: A Golden Hour Gala at The Stutz in Indianapolis — with every dollar going directly to research at UPMC Children's Hospital of Pittsburgh.

We're looking for corporate sponsors who want to make a real impact.

Sponsorship levels vary — learn more at riseforlchad.com/fueling-hope/sponsorship - or reach out directly to Nikki at [email protected]

04/27/2026

We started RISE for LCHAD because this isn’t something we can just sit back and accept—we want to help change what the future looks like for Jillian. The most impactful way we can do that is by supporting medical research.

This led us to Jerry Vockley at UPMC Children's Hospital of Pittsburgh—one of the world’s leading experts in rare metabolic diseases, including LCHAD.

Dr. Vockley has spent decades advancing treatments for rare genetic conditions.

He’s published hundreds of scientific papers and helped establish international care standards for fatty acid oxidation disorders like LCHAD and his work has already led to the development of Dojolvi. A medication that’s improving quality of life for many people with LCHAD.

Now his team is working on next-generation therapies, mitochondrial treatments, and even potential gene therapy approaches to continue improving outcomes.

This research is genuinely life-changing for Jillian—and for families like ours 🩷💛🩷💛

With your support, we’re incredibly excited to contribute the money raised at our Fueling Hope – Golden Hour Gala to Dr. Vockley’s lab at UPMC Children’s Hospital of Pittsburgh and we’re so grateful to have you in this with us!!!

03/27/2026

✨ Don’t Miss Fueling Hope 💛

We’re so excited about the response to our first fundraiser — Fueling Hope: The Golden Hour Gala!

This event means so much to us. RISE for LCHAD was created in honor of Jillian, and every dollar raised is helping move research forward for this rare and life-threatening disease.

Proceeds from the gala will support the work of Dr. Jerry Vockley and his team at UPMC Children’s Hospital of Pittsburgh, who are leading groundbreaking research to develop better treatments — and ultimately a cure — for children living with LCHAD.

✨ Event Details
📅 August 28, 2026
🕖 7:00–10:00 PM
📍 1060 North Capitol Avenue, Indianapolis
🥂 Cocktail attire | Open bar | Heavy appetizers | Silent auction and entertainment

🎟️ Purchase tickets here: https://givebutter.com/a-golden-hour-gala-at-the-stutz-q8gzvi

We can’t wait to fill the room with friends, family, and supporters!!

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💛 Can’t attend? You can still help:
• Connect us with corporate sponsors
• Donate silent auction items or artwork
• Share this post
• Follow our page

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Every ticket, share, and connection helps us get closer to better treatments for kids like Jillian.

✨ Together, we are fueling hope.

03/11/2026

We started RISE for LCHAD to raise money and awareness for medical LCHAD research, which brought us to Dr. Jerry Vockley at UPMC Children’s Hospital of Pittsburgh. One of the world’s leading experts in rare metabolic diseases and fatty acid oxidation disorders like LCHAD.

Dr. Vockley has spent decades advancing treatments for rare genetic conditions, publishing hundreds of scientific papers, helping establish international care standards for metabolic disorders, and developing life saving medications.

Today, Dr. Vockley is working on next-generation medications, mitochondrial treatments, and even potential gene therapy approaches aimed at transforming care for children living with LCHAD and related disorders.

This research is exactly why we created RISE for LCHAD — and why the proceeds from our Fueling Hope – Golden Hour Gala will support Dr. Vockley’s lab at UPMC Children’s Hospital!

Because for Jillian and all other LCHAD families, research isn’t abstract - it makes life changing medications a reality!

✨ Together, we are fueling hope ✨

02/28/2026

Today is Rare Disease Day and we’re choosing to mark it with action!

We’re so excited to announce our first fundraiser for RISE for LCHAD:

✨ Fueling Hope: A Golden Hour Gala ✨

Set during the golden hour at the iconic Stutz Building, this will be an unforgettable evening bringing our community together for a night of purpose, connection, and impact.

Guests will enjoy an open bar, specially curated heavy hors d’oeuvres, a silent auction featuring original artwork and awesome experiences, and entertainment!

This is more than a gala. It’s the beginning of something bigger.

Rare shouldn’t mean overlooked and if you’ve been looking for a way to get involved and support Jillian — this is it. We can’t wait to see you there!! 🥂🥂

🔗 www.riseforlchad.com/fuelinghope

02/26/2026

Two weeks ago, we officially launched RISE for LCHAD.

Today, we’ve raised over $13,000.

We’re honestly overwhelmed by the support — from close friends, friends of friends, and even complete strangers who simply decided this mattered.

For those who don’t know, LCHAD is an extremely rare metabolic disorder. Kids like Jillian can’t use fat for energy. When they get sick or burn more calories than they consume, it can lead to hospitalization — and without proper management, organ damage, vision loss, even heart failure.

Because it’s rare, research is almost entirely privately funded.

That’s why we created RISE.

To fund research.
To support families.
To make sure “rare” doesn’t mean “ignored.”

Seeing this kind of early support tells us we’re not doing this alone — and that means more than we can put into words.

And we’re just getting started.

Big news coming this weekend…. stay tuned 😉

riseforlchad.com