Action for BPAN

04/09/2026

What a truly memorable Action for BPAN Golf Day 2026 at London Golf Club ⛳️💙🩷

A massive thank you all the staff for choosing Action for BPAN as their Charity of the Year. Your generosity and support have been nothing short of incredible 🫶

We’re so incredibly proud and blown away to share the Action for BPAN Golf day 2026 raised over £71,000! 🎉🎉🎉

We’ll be forever grateful to our wonderful sponsors Nozomi Networks JBL AMA Scaffolding Ltd Infinigate Orestone Fire Protection Inner Wings Foundation Hospitality Finder SHL Group Services Ltd AliDeck Lawtech Group Advanced Scaffolding Designs Wellington site security and ryno systems. Without you this day would not have been possible.

There were so many incredible highlights throughout the day, including the JBL Beat the Pro party hole 🎉, the Beer Pong with king pong events, the Nozomi Networks £10,000 Hole-in-One Challenge, the Apex Golf Simulators, Hospitality Finder and Bradby’s nearest to the PIN & Bertie Boucher Putting Challenge, on-course refreshments from Gusbourne, Gin and Rum from gullsandbuoysspirits alongside an incredible selection of prizes and a fantastic auction run by the seriously funny Aaron James 🍾🏌️‍♂️🎤

A huge thank you to all our incredible volunteers,Eventis AV,, Sam Khan Photography Golf scoreboards ford parson and Barclays UK who all helped keep everything running smoothly throughout the day. 🙏🏻

We’ve built new connections, strengthened old ones 💙🩷

Your support means everything as we continue funding vital BPAN research for Emily, Isabella and every child and family affected by BPAN.

We are so incredibly thankful to everyone who attended, sponsored, donated, volunteered, donated prizes, supported the auction and gave their time and generosity so freely.

We will never forget it 🫶

Together, we really are taking Action For BPAN 💙🩷

30/08/2026

OUR SILENT AUCTION IS NOW LIVE AND EVERYONE CAN BID! ⭐️ Link in bio ⭐️

Unforgettable days out, unique sporting memorabilia, premium dining experiences & more… all up for grabs! ⛳️🩷💙

This Bank Holiday weekend, get your hands on something truly incredible while helping us raise vital funds for Action for BPAN.

Whether you’re looking for a unique piece of signed sporting memorabilia, an unforgettable experience or day out, some fabulous dining, or a very special gift for someone you love, there’s something in our auction worth getting excited about.

We’ve worked incredibly hard to pull together an amazing collection of prizes and experiences, all generously donated, meaning 100% of the money raised comes directly to Action for BPAN 🙏🏻

And the best bit? You DON’T need to be joining us at our Charity Golf Day to bid! The auction is open to everyone, so please take a look and share far & wide.

⏰ Bidding closes at 5pm on Tuesday 1st September.

If you’ve got your eye on something, keep checking back, you won’t want to be pipped to the post!

Every single bid helps move us one step closer to developing a treatment for children living with BPAN.

Happy bidding & good luck! 🩷💙

https://uk.emma-live.com/Actionforbpan2026/list-silent-lots?qr=1

19/08/2026

Cakes for a cause - another lovely local event this Sunday just gone, over £270 raised in just a couple of hours in my own gorgeous community, truly am so greatful to live in such a wonderful village with even more wonderful humans 🫶🏻

Special thanks to everyone who donated, Bray, Holyport and Fifield News - from Joanna Korczak and Mike Parkinson & St Michael’s Church, Bray🙏🏻

Come join us for our next local event The Bray Village Fete on 6th Sept - more details coming soon 🥳

What a beautiful afternoon we just had.

Full of kindness and community spirit.

Thank you to each and everyone of you who joined us today!

We raised more than we hoped for and more importantly we raised awareness of what BPAN is.

It’s still not too late to support Action for BPAN! Check out their profile to see how to help!

13/08/2026

🚴‍♀️🚴‍♂️ LONDON TO BRIGHTON! 🌊☀️

There’s still time to join the London to Brighton bike ride! 🚲

Fancy a challenge, a bit of fun and, most importantly… some well-earned fish & chips at the end?! 🍟🐟

We already have a brilliant group of cyclists signed up and it would be amazing to have even more of you join us! 💙

Whether you’re a seasoned cyclist or just fancy giving it a go, come and be part of Team Action for BPAN! 🙌

We’ve set up a London to Brighton WhatsApp group so everyone can connect, organise and cheer each other on.

📲 If you’d like to join us, just send us a DM and we’ll add you to the group!

Let’s cycle to Brighton, raise some money for BPAN research and support families living with this devastating condition. 💙

11/08/2026

🏌️‍♀️ THE ACTION FOR BPAN GOLF DAY IS ALMOST HERE! 🏌️‍♂️

The sold-out Action for BPAN Golf Day at London Golf Club is fast approaching on 1st September, and we’re incredibly excited to be the club’s Charity of the Year! 💙

We are looking for Auction prizes and raffle donations and we’d love your help! 🙏

Do you have a connection to a golf club that might be willing to donate a four-ball, or perhaps a business that could offer a luxury experience, hotel stay, restaurant voucher, activity for the auction or raffle?

Every donation, big or small, will help us raise vital funds for BPAN research and show the strength of our small but mighty community 💖

If you have a connection or think you know a business who could help, please get in touch with us we’d be incredibly grateful. 💙

📩 [email protected]

Please feel free to share this post or tag anyone who might be able to help!

15/07/2026

⚽💙 Calling all Chelsea fans! 💙⚽

We have an incredible prize up for grabs – a signed Chelsea football generously donated to Bertie’s BPAN journey.

An enormous thank you to Winner Winner Competitions, who are donating 100% of the funds raised from this competition to benefit Action for BPAN, helping to fund vital research and support for families affected by this rare condition.

If you’re a Chelsea supporter, or know someone who is, please get involved and share this post. Every entry makes a real difference in supporting the BPAN community.

https://winnerwinnercompetitions.co.uk/competitions/chelseafc

05/07/2026

Thank you, The Sun for helping to raise some much-needed awareness for our small community and for highlighting the challenges our children and families face. 💙🩷

If anyone is thinking of doing some fundraising, please consider supporting Action for BPAN. Together, we can beat BPAN. 🙏

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

Utterly heartbreaking.

29/06/2026

Please could you spare just 2 minutes to nominate Action for BPAN for the chance to receive a £5,000 award? 💙🩷

Your support could make the difference. Thank you! ✨

I just nominated a charity to win £5,000..

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 Global Risks, 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/