The LCC Foundation

LCC/Labrune Syndrome is a rare progressive genetic disorder that affects the brain 🧠 The LCC Foundation helps raise funds for treatments and a cure

[The LCC Foundation @lcc_foundation_]

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 LCC Foundation @lcc_foundation_]

The LCC Circle Podcast just dropped another episode. Listen to it here 👉https://t.co/6iXrcyshTl

[The LCC Foundation @lcc_foundation_]

Week 3 Update: $1,000 match unlocked & turned into $2,000! This week, we’re also highlighting the Tinker family, a powerful part of our LCC community. Be sure to listen to their story on The LCC Circle: Stories, Support, and Science podcast.🎧 Listen here:
https://t.co/jKzNexeDWq

[The LCC Foundation @lcc_foundation_]

Research presented at #ACMG2026. Key findings: 33 patients from 28 families studied; new mouse model replicates human disease; early blood-brain barrier disruption may trigger inflammation; changes seen in RAS, RAP1, immune & calcium signaling pathways. All possible by families.

[The LCC Foundation @lcc_foundation_]

Today in Baltimore at the American College of Medical Genetics and Genomics Annual Meeting, LCC/Labrune Syndrome is part of the global scientific conversation.

This afternoon, Brianna, the lab manager in Dr. Jamie Fraser’s LCC research lab, is presenting
#LCC #ACMG2026

[The LCC Foundation @lcc_foundation_]

✨ We’re almost there! ✨

This week, our community has already raised $600 toward our goal — we are so grateful for every single person who has stepped up to support families affected by LCC. 💙$400 to go. 4 days left. Let’s unlock the match. https://t.co/19iGcOoXoS

[The LCC Foundation @lcc_foundation_]

https://t.co/8yJQKIvnb4

[The LCC Foundation @lcc_foundation_]

It’s Here 💜 From Rare to Remarkable: The Road to St. Louis Begins!

Today, on Rare Disease Day, we are officially launching something powerful.

Will you join us?

👉 Create your page here: https://t.co/8yJQKIvnb4

The road to St. Louis starts today!

[The LCC Foundation @lcc_foundation_]

Every connection in this community started with a moment of “rare.”

This Saturday, in honor of Rare Disease Day, we’re launching From Rare to Remarkable: The Road to St. Louis — a campaign rooted in connection, access, and bringing our global LCC family together.

[The LCC Foundation @lcc_foundation_]

💙 Registration is OPEN for the Global LCC Family & Research Conference!

Families. Researchers. Community. Momentum.
📍 St. Louis + Virtual | 🗓 July 22–25, 2026

🔗 https://t.co/mWrN0LhCwI

#LCCConference #RareToRemarkable

[The LCC Foundation @lcc_foundation_]

It takes a village 💙
We’re seeking volunteers for the Global LCC Family & Research Conference (July, STL).
Students & trainees encouraged—service hours available + meaningful resume experience.
https://t.co/zU6pWt6D6K

[The LCC Foundation @lcc_foundation_]

💙 SAVE THE DATE 💙
Global LCC Family & Research Conference
📅 July 22–26, 2026
📍 St. Louis, Missouri

Because no LCC family should feel alone—and because science moves faster when we come together. More details soon.

[The LCC Foundation @lcc_foundation_]

Happy New Year & 💙 THANK YOU 💙
We set a $30K year-end goal and you helped us raise $35,596! I’m overwhelmed by the generosity shown this season. Your support uplifts our family and the entire LCC community. Together, we are truly #RareToRemarkable ✨

[The LCC Foundation @lcc_foundation_]

It’s the last day of 2025 — and your last chance to make a tax-deductible gift this year. Help us end strong and begin 2026 with unstoppable momentum. 💙 THANK YOU. https://t.co/jh1nMBSlkG

[The LCC Foundation @lcc_foundation_]

FINAL DAYS — We’re so close to reaching our year-end goal! Will you help us cross the finish line?
https://t.co/jh1nMBSlkG

[The LCC Foundation @lcc_foundation_]

🎄 Merry Christmas and Happy Holidays from The LCC Foundation. We are so grateful for our incredible families, supporters, and partners who continue to help us go from rare to remarkable—together. 💫

[The LCC Foundation @lcc_foundation_]

Thomas’s laughter brought light into the world. LCC tried to take that light—but this community is fighting back.

Your year-end gift supports research, families, and hope for every child with LCC.
Please give before Dec 31.

#ForThomas #EndOfYearGiving

[The LCC Foundation @lcc_foundation_]

https://t.co/vJxEC6w56m
💪 Stronger September 💪 Starts Tomorrow with our First Move! Grab your Calendar and get stronger for a cause with us this month!

[The LCC Foundation @lcc_foundation_]

Stronger September — How It Works! 30 days. 1 simple strength move every day. And this year, every dollar raised during Stronger September goes directly to our goal: hosting the first-ever LCC global conference. Ready to join? Sign up today: https://t.co/vJxEC6w56m

[The LCC Foundation @lcc_foundation_]

💪 Something strong is coming this September… and we want YOU with us!

We’re inviting you to join Stronger September — a 30-day movement challenge for all ages & abilities.

✨ Save the date: September 1st