Branchiootorenal - BOR - Syndrome

01/04/2026

🚨 BIG NEWS FOR OUR BORS COMMUNITY 🚨

Today, I had an incredibly important meeting — and I’m so excited to finally share this with you all…

We are officially taking the first steps toward a medical research collaboration alongside clinicians, including a nephrologist who has been directly involved in treating BORS.

This is something I have been working toward for a long time — and today, it became real.

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While the project itself is planned to officially begin in 2027, the groundwork starts now.
Over the coming year, we will be working behind the scenes with a medical team to shape, guide, and build something that has the potential to make a real difference for our community.

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For so long, families living with BORS have faced:
• Limited information
• Very little research
• So many unanswered questions

And this is exactly why this matters.

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This is about bringing together:
✨ Clinical expertise
✨ Lived experience
✨ A community that is ready to be seen and heard

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When the time comes, we will be calling on our BORS families to help contribute and be part of this journey — in a safe, structured, and meaningful way.

Because the truth is…
no one understands BORS better than the people living it every single day.

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I cannot tell you how proud I am of what we are starting here.
This is a huge step forward — not just for us, but for future families who deserve clearer answers, better support, and more understanding.

We are no longer invisible.

We are a community.
And we are moving forward.

🤍

⚠️ Important: Updates and involvement in this project will be shared through our private group only.
If you are currently following along from our public page, please make sure you join our private group so you don’t miss important updates and opportunities to be involved.

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More updates to come as we build this together 🤍

27/03/2026

To learn more, please refer to www.branchiootorenalsyndrome.com

27/03/2026

There was a time when I was sitting in hospital rooms, overwhelmed, exhausted, and quietly wishing I had someone to talk to…
Not just anyone — but someone who truly understood.

Someone who had lived it.
Someone who knew the medical language, the fear, the waiting, the constant decision-making.
Someone who understood what it feels like to carry it all for your child and your family.

Back then, I couldn’t find that person.

And that’s exactly why I became a Family Support Coach.

Because no parent should have to walk this path feeling alone.

Now, I offer 1:1 support sessions for families navigating diagnoses, hospital life, transplants, and everything in between.
A safe space to talk, ask questions, feel heard, and be guided by someone who has walked this road themselves.

I’ve absolutely loved being able to support families walking this same path.
Seeing parents feel more confident, more prepared, and less alone means everything to me.

These sessions are becoming something really special — and I can’t wait to continue helping more new families who need this kind of support.

If you’re in the thick of it right now — I see you. I understand you. And I’m here for you.

You don’t have to do this alone 🤍

If you feel like this is something you need, you can reach out anytime or book a session through my website.

16/03/2026

💬 If You Could Tell Someone One Thing About BORS…

Imagine a parent has just been told their child has Branchio-Oto-Renal Syndrome.

They feel scared.
They feel confused.
They have no idea what the future looks like.

If you could tell them one thing you’ve learned from your own journey, what would it be?

02/03/2026

Last Friday and Saturday, I had the privilege of being part of the Rare Disease Day forum.

Spending time listening, learning and connecting with leaders across the rare disease space was incredibly valuable — both personally and for our Branchio-Oto-Renal (BOR) Syndrome community.

One particularly meaningful connection was with a nephrology doctor who has studied BOR Syndrome for many years. We’ve begun conversations about potential new research pathways and collaborative opportunities.

It’s still early days, but the discussions are promising.

Watch this space.

If you or your family would be interested in being involved in future research conversations or studies, please feel free to reach out privately. I will also be adding a dedicated page within our private forum on the website with more information as discussions progress.

Community participation is how progress happens — and I remain deeply committed to advocating for stronger research and support for our BOR families.

01/03/2026

Can I Ask You Something Gently?

When were you first told “it’s BOR” — or when did you first realise something wasn’t typical?

Was it:
• At birth?
• After hearing concerns?
• During kidney testing?
• Later in childhood?
• Or even in adulthood?

And how did that moment feel?

Confusing?
Relieving?
Terrifying?
Validating?
All of the above?

Every diagnosis story is different. Every timeline is different. And every feeling is valid.

If you feel comfortable, share a little piece of your beginning below 👇

Someone scrolling might recognise their own story in yours.

28/02/2026

Sometimes managing Branchio-Oto-Renal (BOR) Syndrome can feel like a lot.

Appointments, hearing tests, kidney checks, school conversations… it can sit quietly in the background of everyday life, but it’s always there.

I put together a simple checklist for families — not as something overwhelming, just something gentle and practical to help keep track of the important things. The kind of list I wish I had earlier on.

If it helps even one family feel a little more organised or reassured, then it’s done its job.

You can download it for free if you’d like a copy.

26/02/2026

Understanding kidney blood tests can feel overwhelming — especially when you’re living with or caring for someone with Branchio-Oto-Renal (BOR) Syndrome.

We’ve created these simple guides to help break down some of the most common kidney lab results you might see:

• eGFR – how well the kidneys are filtering
• Creatinine – waste levels in the blood
• BUN – another marker of kidney function
• Potassium & Phosphorus – important minerals that the kidneys help regulate
• uACR – checks for protein in the urine

Knowing what the numbers generally mean can help you feel more confident at appointments and ask the right questions.

These charts are for education only — always discuss your individual results with your nephrologist or healthcare team, as everyone’s situation is different.

Education reduces fear. Knowledge builds confidence.

Branchio Oto Renal Syndrome Education Centre 💜

20/02/2026

19/02/2026

Maybe kidney patients will get some more awareness when celebrities like this are diagnosed also. Bethenny Frankel