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. 🧬🦓🦄💗💙💜

⏰ Reminder: Share Your Story by September 4!We’re inviting LCC families to share their experiences for The LCC Foundatio...
09/01/2026

⏰ Reminder: Share Your Story by September 4!

We’re inviting LCC families to share their experiences for The LCC Foundation’s End of Year Giving Campaign.

Your story doesn’t need to be long or polished—it just needs to be real. By sharing how LCC and this community have affected your family, you can help others understand why our work matters and inspire them to support our mission.

đź’™ Fill out this Google Form by Friday, September 4:
https://forms.gle/E3xtDCvUuUpHg6Dd7

With your permission, stories will be featured in campaign emails, social media, or on our website. We will always send you a draft for your review and approval before sharing it publicly.

Thank you for helping us tell the story of our incredible LCC community!

đź“Ł We want to hear from YOU!As we gear up for our End of Year Giving Campaign, we're inviting the LCC community to share ...
08/18/2026

đź“Ł We want to hear from YOU!

As we gear up for our End of Year Giving Campaign, we're inviting the LCC community to share your story. How has LCC made a difference for you or your family? Your words could inspire others to give and help us reach even more families this year.

👉 Share your story by September 4: https://forms.gle/qh8bvvPppisDaNnJA

Selected stories may be featured in our End of Year Giving Campaign! Thank you for being part of the LCC Foundation family. đź’›

07/26/2026

What happens when LCC families, researchers, clinicians, advocates, and partners come together in one room?

We learn from one another. We ask hard questions. We share our stories. We build relationships—and we leave more determined than ever to keep moving LCC research forward.

The 2026 Global LCC Family & Research Conference was filled with meaningful conversations, new connections, honest moments, laughter, tears, and hope. For a rare disease community that is spread across the world, simply being together was incredibly powerful.

To every family, speaker, researcher, volunteer, sponsor, and supporter who made this gathering possible: thank you. You reminded us that no family is alone in this—and that together, we are building a path toward better care, deeper understanding, and treatments for LCC.

This is what persistence looks like. 💙💜

06/11/2026

It’s been a fun-filled and productive 4 days in Boston with some of the most amazing and inspirational women. I’m glad I only have to wait a couple of weeks to see them all again. 💗

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

Address

Lake Saint Louis, MO

Telephone

+16362489930

Website

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