KBG Foundation

KBG Foundation Most people with KBG share at least some physical traits, including a triangular face, heavy eyebrows, curved fingers and spine, and short stature.
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The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG syndrome. KBG Syndrome is a rare genetic disorder caused by a mutation on the ANKRD11 gene, associated with a spectrum of challenges, including developmental delays, cognitive disabilities, behavioral disorders, autism, seizures, hearing loss, skeletal anomalies, heart complications and gastrointestinal problems.

Today is Undiagnosed Day.For many families, the hardest part isn’t just the symptoms, it’s the waiting. The questions wi...
04/30/2026

Today is Undiagnosed Day.

For many families, the hardest part isn’t just the symptoms, it’s the waiting. The questions without answers, the appointments that lead to more appointments, and the feeling that something isn’t right even when no one can tell you what it is. Being undiagnosed can feel isolating, like you’re living in the space between what is known and what is real.

At the KBG Foundation, we know how long that road can be because we’ve lived it alongside so many families still searching for answers. You are not alone, and your story matters.

How long did it take for you or your loved one to receive a diagnosis?


💙 National Sibling Day 💙Today, we celebrate a very special kind of bond:the siblings who grow up alongside rare.The brot...
04/10/2026

💙 National Sibling Day 💙

Today, we celebrate a very special kind of bond:
the siblings who grow up alongside rare.

The brothers and sisters of individuals with KBG syndrome are protectors, teachers, advocates, and friends.

They learn patience early.
They appreciate the little victories others might miss.
They stand up, speak out, and love in ways that are fierce and unwavering.

Sometimes their journey includes questions, sacrifices, or moments of feeling unseen…but their role is extraordinary.

To every KBG sibling:
thank you.

💙 Tag a sibling who deserves to be celebrated today.

If you want an Annette-punch version, I’d go with:



📣 Simons Searchlight Releases New Quarterly Reports! 📣📊 The Simons Searchlight April 2026 quarterly report is here—with ...
04/09/2026

📣 Simons Searchlight Releases New Quarterly Reports! 📣

📊 The Simons Searchlight April 2026 quarterly report is here—with updated insights and fresh data on individuals with ANKRD11 (KBG syndrome), powered by families like ours.

Check out the valuable information in this report here:
http://bit.ly/ANKRD11Report

These reports are based on medical history information generously shared by participants and include data in four key areas:

Age Ranges
Developmental and Behavioral Conditions
Neurological Conditions
Gastrointestinal Conditions

They also feature community participation progress numbers, showing how families are actively moving research forward.

💡 By completing surveys over time, we're helping researchers better understand KBG syndrome and how it changes across the lifespan. Together, we’re turning limited knowledge into meaningful discoveries—for our families and others in the future.

Thank you for being part of this important work! 💙

*Not a current Simons Searchlight participant? Learn how you can contribute to the study and be included in future reports:

https://bit.ly/Why_Join_Simons_Searchlight

April has been full of blue the last two days. 💙Today, let’s go a little deeper.Many individuals with KBG syndrome shar...
04/03/2026

April has been full of blue the last two days. 💙
Today, let’s go a little deeper.

Many individuals with KBG syndrome share traits often associated with autism—communication differences, sensory sensitivities, and unique ways of experiencing the world.

But here’s what often gets missed:

These are not just “symptoms.”
They are part of a whole person; someone with strengths, personality, humor, and a way of seeing the world that deserves to be understood, not simplified.

Awareness is a starting point.
Understanding is what changes lives.

💜 Every individual is more than a diagnosis
💜 Rare doesn’t mean invisible

Every Link Matters.

April is Autism Acceptance Month and today is World Autism Awareness Day!Many individuals with KBG syndrome are also dia...
04/02/2026

April is Autism Acceptance Month and today is World Autism Awareness Day!

Many individuals with KBG syndrome are also diagnosed with Autism Spectrum Disorder (ASD), and for many families in our community, this is part of their daily journey.

This month, we acknowledge and stand alongside our ASD families, their advocacy, their resilience, and the unique strengths and perspectives they bring to our community.

We see you. We support you.
Every Link Matters.

Rare & Remarkable is almost here. 💜KBG Awareness Day is June 11th, and this year we’re inviting you to wear your support...
03/31/2026

Rare & Remarkable is almost here. 💜

KBG Awareness Day is June 11th, and this year we’re inviting you to wear your support.

We heard your feedback—so this year, we’re offering two different places to purchase the same design, giving you more choice in where you buy.

🛍️ Shop here: https://store.kbgfoundation.org/

🛍️ Or here: https://www.bonfire.com/kbg-rare-and-remarkable/

Every shirt helps spark conversations, raise awareness, and show the world just how rare and remarkable this community truly is.

Because visibility matters.
Because awareness matters.
Because Every Link Matters.

KBG Awareness starts with being seen.Ask your city or state to recognize June 11 as KBG Syndrome Awareness Day.🧬 Use our...
03/22/2026

KBG Awareness starts with being seen.

Ask your city or state to recognize June 11 as KBG Syndrome Awareness Day.

🧬 Use our templates
📣 Contact your local officials
❤️ Help make KBG visible

Because Every Link Matters.

🔗 https://kbgfoundation.org/kbg-syndrome-downloads-1 -4193-4f4f-ab39-295983c58832

KBG Awareness starts with being seen.Ask your city or state to recognize June 11 as KBG Syndrome Awareness Day.🧬 Use our...
03/22/2026

KBG Awareness starts with being seen.

Ask your city or state to recognize June 11 as KBG Syndrome Awareness Day.

🧬 Use our templates
📣 Contact your local officials
❤️ Help make KBG visible

Because Every Link Matters.

🔗 https://kbgfoundation.org/kbg-syndrome-downloads-1 -4193-4f4f-ab39-295983c58832


We’re proud to announce the theme for the 2026 KBG Syndrome Awareness Day:Rare & RemarkableEvery individual with KBG has...
03/20/2026

We’re proud to announce the theme for the 2026 KBG Syndrome Awareness Day:

Rare & Remarkable

Every individual with KBG has a story worth telling.
Every family carries strength that often goes unseen.
Every journey matters.

This year, we celebrate what makes this community not just rare…
but also…remarkable.

On June 11, we come together to raise awareness, share our voices, and be seen.

Because Every Link Matters. ❤️

Imagine the brain as a locked door full of memory and learning potential — but kids with KBG syndrome don’t always have ...
12/04/2025

Imagine the brain as a locked door full of memory and learning potential — but kids with KBG syndrome don’t always have the right key.

Thanks to support from the Stollery Children’s Hospital Foundation, researcher Leenah Qureshi is studying how the ANKRD11 gene affects brain development, especially in the hippocampus (the center for learning and memory).

Early findings suggest that mutations in this gene early in development may change how brain cells grow and survive — offering new clues for future treatments and drug screening.

Read more about Ms. Qureshi’s: https://www.wchri.org/our-impact/summer-studentship-profiles/2025/leenah-qureshi/

🔬 Every link matters.

As Giving Tuesday comes to a close, we want to say thank you to every supporter, volunteer, researcher, and family who h...
12/03/2025

As Giving Tuesday comes to a close, we want to say thank you to every supporter, volunteer, researcher, and family who has walked with us over the last 10 years.

Your generosity has:

🟣 Built communities
🟣 Advanced science
🟣 Changed lives

Tonight, we ask for your help one more time.

If you haven’t given yet, please consider a donation — whatever size is right for you. Your support ensures that families searching for answers will find community, connection, and hope.

🧡 Donate before midnight: www.kbgfoundation.org

PayPal / Venmo:

Hope isn’t a wish. It’s our shared blueprint for progress.

Address

9000 Rockville Pike
Bethesda, MD
20894

Website

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