The LCC Foundation

The LCC Foundation The LCC Foundation is a nonprofit organization working to fund medical research and support LCC/Labrune Syndrome patients and their families. 🧬🦓🦄💗💙💜

05/15/2026

🎙️ NEW EPISODE OUT NOW: The Brown Family’s LCC Journey 💙

In this heartfelt episode of The LCC Foundation’s podcast, The LCC Circle: Stories, Support, and Science, the Brown family shares their journey with Leukoencephalopathy with Brain Calcifications and Cysts — from diagnosis and daily life to resilience, hope, and the power of community.

Their story is a powerful reminder that no family should face rare disease alone. đź’«

We are so grateful to the Brown family for opening their hearts and helping bring awareness to the realities of living with LCC.

🎧 Listen now and share to help us continue turning rare into remarkable. 👉 https://www.buzzsprout.com/2545566/episodes/19177471

We are so excited to share a first look at something incredibly meaningful… 💜✨ The 2026 Global LCC Family & Research Con...
05/06/2026

We are so excited to share a first look at something incredibly meaningful… 💜

✨ The 2026 Global LCC Family & Research Conference ✨
📍 St. Louis, MO | 📅 July 22–25, 2026

This is more than a conference—
It’s where families, researchers, and hope come together.

From powerful patient stories to groundbreaking research and an FDA-focused session, this event is designed to bring our community closer and move LCC forward—together.

For many, this will be the first time:
đź’ś Meeting another LCC family
🧠 Connecting directly with researchers
🧬 Seeing the future of LCC research unfold

👉 Take a look at our preliminary agenda and see what’s in store.

đź“Ś Full schedule and speaker details will be shared with registered attendees.

🎟️ Register here: https://givebutter.com/GLCCFRC

Together, we are turning rare into remarkable.

When our son was diagnosed with a rare disease, we were told very little was known.No roadmap. No treatment. No clear ne...
04/22/2026

When our son was diagnosed with a rare disease, we were told very little was known.
No roadmap. No treatment. No clear next step.

So we decided to build one.

This July, we are bringing families, researchers, and clinicians together in St. Louis for the first-ever LCC Family & Research Conference—a space for connection, answers, and hope.

But we can’t do it alone.

We’re looking for local businesses, community partners, and individuals who want to stand with families like ours.

Sponsorships start at just $100–$1,000, and every dollar goes toward supporting families and accelerating research.

💙 If you own a business, know someone who does, or just want to help—this is your moment to make a real impact.

📩 Message me or comment below and I’ll reach out personally.

✨ From Rare to Remarkable: What You Made Possible in 2025 ✨This past year, something incredible happened.Because of this...
04/14/2026

✨ From Rare to Remarkable: What You Made Possible in 2025 ✨

This past year, something incredible happened.

Because of this community—because of you—we didn’t just raise awareness…

We built connection.
We created momentum.
We moved closer to something that once felt impossible.

In 2025:
đź’› Families found us from across the world
đź’› Researchers and advocates came together
đź’› A global LCC community continued to grow stronger

One moment that stays with me—
A family from the Netherlands found us through our website.
From there, we helped connect them with doctors and researchers to support Naomi’s care.

That’s what this is about.

Turning isolation into connection.
Uncertainty into direction.
Rare… into remarkable.

This Impact Report isn’t just numbers—it’s people, progress, and possibility.

👉 https://canva.link/2025impactreport

And the truth is… we’re just getting started.

In 2026, we’re building toward even more:
• Advancing research toward clinical trials
• Bringing families together in St. Louis (& virtually)
• Continuing to grow this global network of support and science

If you’ve been part of this journey—thank you.
If you’re just finding us—welcome.

We’re so glad you’re here 💛

—Ashley
Founder, The LCC Foundation

04/10/2026

I’m leaving the Ultragenyx Rare Disease Bootcamp feeling incredibly grateful.

Grateful for a space that didn’t just talk about rare disease—but truly leaned in to understand our communities, our urgency, and our priorities. The sincerity behind advancing research that reflects patient voices was deeply felt.

Grateful for the connections—advocates, researchers, and industry partners—all coming together with a shared purpose: to move this work forward, faster and better, for the families who are waiting.

And grateful for the doors that were opened. The conversations started here hold real potential for meaningful collaboration and progress in the months ahead.

This work is not easy. But being in a room full of people who genuinely care reminds me—we are not doing it alone.

Onward, together. đź’™

Big shout out to my newest top fans! đź’ŽDavid Bamper, Helen Johnston, Chris CrosbyDrop a comment to welcome them to our co...
04/02/2026

Big shout out to my newest top fans! đź’Ž

David Bamper, Helen Johnston, Chris Crosby

Drop a comment to welcome them to our community,

💙 From Rare to Remarkable — Because of YOU 💙We are overwhelmed with gratitude.Because of this incredible community, we r...
04/01/2026

💙 From Rare to Remarkable — Because of YOU 💙

We are overwhelmed with gratitude.

Because of this incredible community, we raised $26,560 and reached 147 supporters in our From Rare to Remarkable: The Road to St. Louis campaign.

147 people who said yes.
147 people who believe that rare deserves to be seen, studied, and supported.
147 people helping move LCC research forward.

This isn’t just a number.
This is momentum.
This is hope.
This is progress toward clinical trials and real treatments for our community.

To every donor, every captain, every person who shared, encouraged, and showed up—

Thank you for standing with us.
Thank you for believing in this mission.
Thank you for helping turn rare into remarkable.

We’re not done—but because of you, we are so much closer.

With gratitude,
Ashley & The LCC Foundation đź’™

03/30/2026

We are 51% of the way there… and 136 of you have stepped up. 💛

I truly can’t thank you enough for showing up for this community.

But we are not done yet.

There is still a $5,000 MATCH on the table—and TOMORROW is the final day to give.

This is our moment.
To push forward.
To accelerate research.
To move LCC from rare… to remarkable.

If you’ve been waiting to donate—this is it.
If you’ve already given—please help us by sharing.

Let’s finish this together. 🤍

đź”— https://givebutter.com/P2PConference

We are fundraising for Elisabeth and Katelyn.Two sisters.One diagnosis.A journey they never chose—but face together ever...
03/28/2026

We are fundraising for Elisabeth and Katelyn.

Two sisters.
One diagnosis.
A journey they never chose—but face together every single day.

They share more than just childhood memories…
They share hospital visits, uncertainty, and a future that still has too many unknowns.

And yet—
they also share strength.
Resilience.
And a bond that refuses to break.

This is why we fight.
Because no two sisters should have to walk this road without options.

This is why we build.
Because families like theirs deserve more than waiting.

And we cannot do it without you.

👉 Donate: https://givebutter.com/P2PConference
👉 Share
👉 Stand with Elisabeth & Katelyn *Drop a 💜 in the comments to let them know you are cheering them on*

Because this isn’t just about today—
it’s about giving them a future.

Together, we go from rare to remarkable.

Address

Lake Saint Louis, MO

Telephone

+16362489930

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