Action for BPAN

13/06/2026

Exactly one week away from our Step Up for BPAN founders fundraiser to climb beautiful mount Snowdon 🥾⛰️🩷💙

A huge shoutout to the lovely Louise van der Valk and her work friends from Amwins, they’re taking on their climb today! 👏 We’re so grateful for your support and determination to help make a difference. If you see their updates, be sure to give them some love & encouragement 🩷💙

If you’ve been sat thinking what you can do to help then there’s still time to get involved!

You don’t have to climb Snowdon or take part on the same day as us. Whether it’s a walk, hike, run, cycle, swim, workplace challenge or any activity that gets you moving, you can be part of Step Up for BPAN and help us raise vital funds and awareness🚶‍♀️🏃‍♂️🚴‍♀️🏊

Simply start your fundraising page, choose your challenge, and join our community of supporters who are stepping up to be part of our mission to eradicate BPAN. Together, we can make a real impact for those affected by BPAN 💙🩷

https://www.justgiving.com/campaign/step-up-for-bpan

We’d love to have you with us as we know we cannot do this alone..

08/06/2026

There are some moments in life, when someone tells you something that sticks with you forever.

Nicole found this from another mother navigating the unimaginable.

"You'll become your child's expert. You'll become your child's advocate"

At the time, she couldn't see how she could do it.

Her daughter had been diagnosed with BPAN, a rare neurodegenerative condition, for which there is currently no cure.

In a newly published episode of The Focal Plane Podcast, I had the privilege to speak with co-founders of Action for BPAN, Nicole Harper & Kelly Sayers.

They share the deeply personal journeys around their daughters, Emily and Isabella, that led them to create a phenomenal charity that brings families together, with an aim to fund groundbreaking research that could change the future for children living with BPAN.

In the full episode (soon to be linked in the comments below) we discuss

- What BPAN actually is and how it affects children and families
- The terrifying reality of seizures, hospitalisations and uncertainty
- The emotional impact of receiving a life-changing diagnosis
- Why isolation is one of the biggest challenges families face
- The creation of Action for BPAN
- The gene therapy research currently underway at Great Ormond Street Hospital and UCL
- The £2.3 million goal that could help move research into human trials
- Why hope alone isn't enough, and why action matters.

Please consider supporting this amazing charity, and help them change lives.

Visit their website for more information. https://www.actionforbpan.co.uk/

02/06/2026

Join us for the Action for BPAN Charity Golf Day at the prestigious Golf Club on the 1st of September 2026! ⛳️

We’re honoured to be the London Golf Club chosen Charity of the Year 2026 and we are so excited to bring together golfers, supporters, volunteers, families, and friends for a special day!🏌️‍♂️

This isn’t just golf. It’s a step closer to a treatment for those living with BPAN. Action for BPAN is supporting life changing research, including a pioneering gene therapy project with Great Ormond Street Hospital and University College London 🧬🔬

⛳ 18 holes
🏌️ Competitions & prizes
🎁 Auctions & fundraising activities
🤝 Sponsorship, tickets and volunteer opportunities available - https://heyzine.com/flip-book/4bac11a452.html /1

Whether you play golf, would like to volunteer, sponsor, donate, or simply come along and support the day we’d love to hear from you.

Every ticket, every donation, and every conversation brings us closer to effective treatments for BPAN. Please share and help us make a difference together 🙏

22/05/2026

Please help support Action for BPAN 💙🩷
Nominate us for the £5,000 Health Draw and please share with friends & family too 🙏
Every nomination counts!

22/05/2026

LM Designs from the bottom of our hearts a HUGE thank you 🩷💙 You’ve created something so special, the love and creativity you’ve poured into this is beyond incredible 😘 When I asked if you would sing “Rise Up” at the base of Snowdon for this years climb I could feel the excitement tingling on my skin, that feeling when someone’s voice takes your body into happy sensations - you do that 💛 🎶🎤 Your voice, this song, your pure heart and our story is such a beautiful combination, we so appreciate you Lani 🥺😘🥺 ###

18/05/2026

We want to say a huge THANK YOU following KamalaFest ✨ What a truly special day filled with love, connection, kindness and amazing energy 🫶🏻

We’re so grateful to share that together we raised over £650 for Action for BPAN 🙏🏻 This completely exceeded our expectations and means so much to us 💛

A massive thank you to everyone who offered support, treatments, collaborations, chats, hugs, and encouragement 🥰 From burritos & nachos 🌯 to yoga 🧘🏻‍♀️, healing ✨ and future fundraising ideas, we felt so supported and inspired.

More than anything, it was beautiful to be in a space where people genuinely listened, connected, and wanted to help 💫 Awareness and community like this are priceless in our mission to eradicate BPAN.

We also had the BEST time laughing, chatting, and sharing our story alongside such lovely humans 💕 Huge love and thanks to Nancy, Steven, your family, friends and everybody involved 🙏

💛

02/05/2026

Ok lovely friends - KamalaFest is 1 million percent the place to be this time next week, if you like wholesome, family friendly, happy, healthy wellness vibes then you seriously cannot miss this ☺️

You’ll also have the added bonus of seeing Action for BPAN there with our swanky new gazebo, we’d absolutely love your support so do come by and enjoy a beautiful day with us ☀️✨

I’m so excited to see how many hugs & high fives Emily dishes out!!! She’s a brilliant judge of character so come see if you pass the test if you dare 😜😂

28/04/2026

What a wonderful achievement by Scarlett’s School! 💫

Thank you to Year R who amazed everyone with their first-ever nativity performance, confidently bringing the story to life through songs & instruments 🎶

The event wasn’t just heartwarming, it was impactful too. Thanks to the efforts of not only Scarlett’s class but the whole infant school, the generosity of families and the hard work of staff, an incredible £908.37 was raised for Action for BPAN! 💙🩷

Such a lovely example of community spirit and a truly special fundraiser well done to all involved! 👏👏

26/04/2026