Action for BPAN

02/11/2026

You don’t have to be in the room to make an impact 🩷💙

Our Gala Dinner is sold out, but you can still be part of the fundraising by making a pledge online.

For families affected by BPAN, the future can feel frighteningly uncertain. Your pledge will help move gene therapy research forward and bring us closer to a future that looks brighter than the one families are currently told to expect.

Every contribution helps. All funds raised through the Gala Pledge Drive will support the wider work to accelerate BPAN gene therapy research and move us closer to human clinical trials.

Make your pledge here:
https://www.justgiving.com/page/actionforbpangaladinner2026

If you’re unable to make a pledge, sharing or liking this post can help it reach someone who can. And if you know a person or organisation that might be able to help, we’d be so grateful for an introduction 🙏🏻

27/10/2026

Our Silent Auction is now LIVE! 🎉

From Premier League football and a Gordon Ramsay dining experience, to West End theatre, cocktail making, shooting experiences, luxury dining, hotel stays and some fantastic signed sporting memorabilia, there’s plenty to bid on.

And the best bit? You don’t need to be attending our Gala Dinner to take part. Our silent auction is open to everyone..

Whether you’re looking for an experience to enjoy, a special Christmas present or simply fancy treating yourself, have a browse and see what catches your eye 🩷💙

Every single prize across our auctions and raffle has been generously donated, which means the money will go directly to supporting Action for BPAN and vital BPAN research.

⏰ The silent auction closes at 9:45pm on Thursday 5th November.

👉 Browse the lots and start bidding, link in bio 🔗

https://uk.emma-live.com/ActionforBPANGala/list-silent-lots

Please share with friends, family and colleagues. The more people bidding, the more we can raise.

A huge thank you to every business and individual who has donated. We’ve been completely blown away by your generosity and couldn’t have created this auction without you 💙🩷

27/10/2026

Our Silent Auction is now LIVE! 🎉

From Premier League football and a Gordon Ramsay dining experience, to West End theatre, cocktail making, shooting experiences, luxury dining, hotel stays and some fantastic signed sporting memorabilia, there’s plenty to bid on.

And the best bit? You don’t need to be attending our Gala Dinner to take part. Our silent auction is open to everyone..

Whether you’re looking for an experience to enjoy, a special Christmas present or simply fancy treating yourself, have a browse and see what catches your eye 🩷💙

Every single prize across our auctions and raffle has been generously donated, which means the money will go directly to supporting Action for BPAN and vital BPAN research.

⏰ The silent auction closes at 9:45pm on Thursday 5th November.

👉 Browse the lots and start bidding here:

https://uk.emma-live.com/ActionforBPANGala/list-silent-lots

Please share with friends, family and colleagues. The more people bidding, the more we can raise.

A huge thank you to every business and individual who has donated. We’ve been completely blown away by your generosity and couldn’t have created this auction without you 💙🩷

05/10/2026

🪂 Meet Leslie Elvines! At 78 years young, a former paratrooper and 53 years a London cabbie Les returned to the skies, taking on one more jump this time for Action for BPAN! 💙🩷

I met Les completely by chance in his black cab on my way to Great Ormond Street Hospital. We got chatting, and I told him about my daughter Isabella, the devastating condition she lives with, and how Kelly and I had created Action for BPAN to help fund the research that could change the future for our families.

Les had never heard of BPAN before but he heard our story and decided he wanted to help 💪

At an age when most people would be taking things a little easier, Les took on a challenge like this for children and families he had only just discovered 🫶

That is the power of sharing your story. One conversation. One decision to help. What a hero! We honestly cannot put into words how grateful we are. ❤️

Please watch Les take on his incredible jump and show him some support, Every share helps us reach another person. Every donation helps us get closer to funding the research our beautiful children desperately need ✨

https://www.justgiving.com/page/leslie-elvines-1789390772316?utm_medium=FR&utm_source=CL

🪂 Thank you, Les. What an incredible man!! 💙🩷

04/10/2026

Meet Stephanie, an amazing big sister to 5 year old Saylor, who was recently diagnosed with BPAN.

This morning, Stephanie took on the busy streets of Glasgow in the Great Scottish Run and absolutely smashed it! Her mum and dad are so proud of her fierce determination and dedication to fundraising for a cure for BPAN.

We’re incredibly grateful to Stephanie and everyone who has donated to support her 🩷💙

Please donate what you can here:

https://www.justgiving.com/page/karen-shields-1?utm_medium=FR&utm_source=WA&utm_campaign=lc_frp_share_transaction_transactional_–donation_received–_nth_donation

04/10/2026

04/10/2026

Meet Stephanie, an amazing big sister to 5 year old Saylor, who was recently diagnosed with BPAN.

This morning, Stephanie took on the busy streets of Glasgow in the Great Scottish Run and absolutely smashed it! Her mum Kaz Shields, and dad Liam Thompson are so proud of her fierce determination and dedication to fundraising for a cure for BPAN.

We’re incredibly grateful to Stephanie and everyone who has donated to support her 🩷💙

Please donate what you can here:

https://www.justgiving.com/page/karen-shields-1?utm_medium=FR&utm_source=WA&utm_campaign=lc_frp_share_transaction_transactional_–donation_received–_nth_donation

28/09/2026

A huge thank you to Thushani for going above and beyond for Action for BPAN! 💙🩷

After discovering us through LinkedIn and learning all about BPAN, Thushani a medical student has thrown herself into supporting and raising awareness our little community. Not only did she take on the mammoth challenge of the London to Brighton bike ride for Action for BPAN, but she also organised a bake sale at Barts and The London Medical School to help raise vital awareness and funds 🫶

We’re so grateful for your support, Thushani, and for taking the time to learn about BPAN and get involved in making a difference. Every action really does count ❤️🚴‍♀️🧁

https://www.justgiving.com/page/thushani-thayaparan-3?utm_medium=FR&utm_source=CL