KBG Foundation

Today is KBG Syndrome Awareness Day.

Every year, we want to do more. Say more. Share more. Reach more people.

And every year, we are reminded that awareness is not just a campaign. It is real life.

It is the appointments, the therapies, the paperwork, the research, the questions, the waiting, the worrying, the explaining, the celebrating, and the loving.

It is every family who has had to explain KBG syndrome for a doctor.
Every parent searching for answers.
Every child, teen, and adult who deserves to be seen as more than a diagnosis.
Every sibling, caregiver, researcher, clinician, and advocate who keeps showing up.

KBG syndrome is rare, but this community is remarkable.

Today we raise awareness not because our families are invisible, but because too often, the world does not know how to see them yet.

We are here.
We are linked.
And every link matters.

Who do you raise awareness for?

As KBG Syndrome Awareness Day begins for our friends across the pond, we’ll be honest: we had hoped to do more this year.

More posts. More graphics. More reminders. More everything.

But rare disease life does not always leave room for polished plans. Sometimes the work is quieter. Sometimes advocacy is happening behind the scenes. Sometimes the people doing the awareness are also caregivers, parents, siblings, patients, and families trying to get through the day.

So today, even if we are quieter than planned, we are still here.

We are still raising awareness for KBG syndrome.
We are still fighting for recognition, research, understanding, and connection.
We are still celebrating every rare and remarkable person in this community.

To our KBG families in the UK and around the world: we see you, we love you, and we are grateful to be linked together.

Because every link matters.

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 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 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 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 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.

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.

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.