Lmbrd2 Association

13/09/2026

We’ve published a straightforward guide to reading the key line in your child’s genetic report - what each abbreviation means and which five classification words matter most. We also list three practical questions to bring to your geneticist and explain why a VUS is a gap in knowledge, not a verdict. Read the full article: https://wix.to/obpeuHK 💬🔬

How did you feel when you first saw your child’s report? Share below - your experience could help another family.

The LMBRD2 Association is a Non-profit community taking action to:

🔬 support genetic and medical research
🩺 Raise awareness of this nano rare disease
🤝 break the isolation of affected families
🗣️ make the voices of these often-forgotten children heard

You can help and support us :
💖 GoFundMe : https://lnkd.in/dZF5iFs3
💖 HelloAsso : https://lnkd.in/dHYMczFK
🚀 Our new store online : https://store.lmbrd2.org/

Thank You !

13/08/2026

💙 Meet Cannon. A portrait of quiet strength.
At just five years old, Cannon is showing us what courage, determination, and the right support can make possible. His journey with LMBRD2 is unique — and deeply inspiring.

✨ Discover Cannon’s story, his progress, his challenges, and the people who believe in him.

👉 Read his story here: https://www.lmbrd2.org/post/cannon-a-portrait-of-quiet-strength

💙 Every LMBRD2 story matters. Every child has a story worth telling. 💙

05/08/2026

Fundraising for an ultra‑rare condition like LMBRD2 does more than raise money - it creates visibility and opens doors to research, trials and support for families. Read our practical guide for ready-to-use ideas (birthday fundraisers, sports challenges, community events, workplace matching and online campaigns) and step-by-step platform recommendations. 💙

We explain what donations directly support - CRISPR and iPSC research, family resources, patient registry and advocacy - and offer help setting up your campaign. Have questions or planning an event? Tell us below or visit: https://www.lmbrd2.org/post/how-to-fundraise-for-lmbrd2🔬🤝

What fundraiser idea would you try first? 👇

16/07/2026

🌍 𝗖𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 𝗨𝗽𝗱𝗮𝘁𝗲 – 𝗢𝘂𝗿 𝗚𝗹𝗼𝗯𝗮𝗹 𝗦𝘂𝗽𝗲𝗿𝗵𝗲𝗿𝗼 𝗖𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 𝗖𝗼𝗻𝘁𝗶𝗻𝘂𝗲𝘀 𝘁𝗼 𝗚𝗿𝗼𝘄! 🦸‍♀️🦸‍♂️

Over the past few months, our international superhero community has continued to grow, and we're delighted to welcome all of our new superheroes. 💙💛

🎉 𝗪𝗲 𝗮𝗿𝗲 𝗻𝗼𝘄 𝟮𝟵 𝘀𝘂𝗽𝗲𝗿𝗵𝗲𝗿𝗼𝗲𝘀 𝗳𝗿𝗼𝗺 𝗮𝗿𝗼𝘂𝗻𝗱 𝘁𝗵𝗲 𝘄𝗼𝗿𝗹𝗱 — 𝘁𝗵𝗮𝘁'𝘀 𝟴 𝗺𝗼𝗿𝗲 𝘀𝘂𝗽𝗲𝗿𝗵𝗲𝗿𝗼𝗲𝘀 𝗶𝗻 𝗷𝘂𝘀𝘁 𝟲 𝗺𝗼𝗻𝘁𝗵𝘀!

Thank you to everyone who has joined our community and is helping us build a stronger international network.

Here's an updated overview of our superheroes by country (in alphabetical order):

🇦🇺 Australia – 1
🇨🇦 Canada – 1
🇨🇴 Colombia – 1
🇫🇮 Finland – 1
🇫🇷 France – 2
🇩🇪 Germany – 3
🇭🇰 Hong Kong – 1
🇮🇳 India – 1
🇮🇹 Italy – 1
🇱🇻 Latvia – 1
🇲🇻 Maldives – 1
🇷🇴 Romania – 1
🇪🇸 Spain – 1
🇬🇧 United Kingdom – 3
🇺🇸 United States – 10

✨ More and more people are discovering our page and social media channels every month, helping us reach superheroes and families across the globe.

💙 𝗡𝗼𝘄 𝘄𝗲 𝗻𝗲𝗲𝗱 𝘆𝗼𝘂𝗿 𝗵𝗲𝗹𝗽!

➡️ Please share our posts.
➡️ Invite your family, friends, healthcare professionals, and anyone who believes in inclusion to follow our page.
➡️ Every share helps us reach more superheroes and families who may be looking for information, support, and a community that understands their journey.

𝑇𝑜𝑔𝑒𝑡ℎ𝑒𝑟, 𝑤𝑒 𝑎𝑟𝑒 𝑏𝑢𝑖𝑙𝑑𝑖𝑛𝑔 𝑎 𝑠𝑡𝑟𝑜𝑛𝑔𝑒𝑟 𝑔𝑙𝑜𝑏𝑎𝑙 𝑐𝑜𝑚𝑚𝑢𝑛𝑖𝑡𝑦 𝑤ℎ𝑒𝑟𝑒 𝑒𝑣𝑒𝑟𝑦 𝑠𝑢𝑝𝑒𝑟ℎ𝑒𝑟𝑜 𝑏𝑒𝑙𝑜𝑛𝑔𝑠 𝑎𝑛𝑑 𝑛𝑜 𝑜𝑛𝑒 𝑓𝑎𝑐𝑒𝑠 𝑡ℎ𝑒𝑖𝑟 𝑗𝑜𝑢𝑟𝑛𝑒𝑦 𝑎𝑙𝑜𝑛𝑒. 🌍💙🦸‍♀️🦽🦿🦸‍♂️

14/07/2026

👕 Wear the conversation.

LMBRD2 affects fewer than 40 known people in the world. When a disease is this rare, visibility isn't a detail — it's what gets us heard by doctors, researchers, funders. No visibility, no research. No research, no hope.

That's why we launched our LMBRD2 goodies shop 💙 — t-shirts and accessories designed to turn every day out into a chance to talk about it. Every piece worn is a question asked, a conversation started, one more family who feels a little less alone.
It's not just merch. It's visibility you can wear.

https://store.lmbrd2.org/

13/07/2026

🧠 New on the blog: Epilepsy and LMBRD2

Seizures are part of daily life for some families in our community — and they deserve a resource that speaks directly to them: what to do during a seizure, when to call for help, what the science actually says (and doesn't) about LMBRD2, and how school support works wherever you live.
Clear, sourced, no jargon. Written for families, for all, not textbooks. 👇

This article does not claim to answer everything — the science on LMBRD2 is still in its earliest stages. What it offers: a clear line between what is specifically documented for LMBRD2 and what belongs to general medical knowledge about epilepsy in children, the life-saving steps to know, and gui...

11/06/2026

What does motor delay look like in kids with LMBRD2? Learn more on our website!

31/05/2026

Making music, making magic featuring superhero Oaklen! 🎶

27/05/2026

1 year of hope, awareness, research and community! Thank you for being a part of our journey!

24/05/2026

Every step was worth the wait 👣