Batten Disease Family Association

Batten Disease Family Association The Batten Disease Family Association CIO (BDFA) was formed in 1998 and gained charity status in 2001.
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We are here to support families affected by Batten Disease, to give support to professional carers and fund research to find a cure.

Wishing our wonderful Batten community a happy and peaceful festive season. At this time, we remember all the inspiring ...
24/12/2025

Wishing our wonderful Batten community a happy and peaceful festive season. At this time, we remember all the inspiring children and young adults living with Batten disease, their families, and the precious ones no longer with us.

We know this time of year can be especially difficult for many, and we send our love and thoughts to you all.

Please note that our office will be closed from 24th December and will reopen on 2nd January 2026.

🎅It’s been a busy and meaningful year for the BDFA. From standout moments to quiet but important progress behind the sce...
22/12/2025

🎅It’s been a busy and meaningful year for the BDFA. From standout moments to quiet but important progress behind the scenes, the past twelve months have helped shape who we are and where we’re going. This review captures the key highlights, challenges, and achievements that defined the year. 🎅

Read the review at the link ➡➡
https://bdfa-uk.org.uk/sites/default/files/2025-12/BDFA%202025%20Review%20of%20the%20year%20Final.pdf

🧡🧡 Good Luck Sarah! 🧡🧡“I wanted to share that I will sadly be leaving the BDFA, my last day is today, Tuesday 16th Dece...
16/12/2025

🧡🧡 Good Luck Sarah! 🧡🧡

“I wanted to share that I will sadly be leaving the BDFA, my last day is today, Tuesday 16th December.
It has been a real privilege to work with this community over the last almost 3 years and the incredible supporters, who go above and beyond to make a real difference to the lives of those affected by Batten disease. The support from this community has been inspiring to me and it’s been such a pleasure to get to know so many of you.

I am very grateful to all at the BDFA and the Batten community for all I have learnt in the last 3 years, which goes far beyond fundraising, and I’m looking forward to bringing these learnings, skills and experiences into my new role. I will of course continue to support the BDFA and I wish everyone in the Batten community the very best.

The BDFA team will continue to provide the best support to our wonderful fundraisers, so do get in touch on fundraising@bdfa-uk.org.uk if you need anything at all.”

We are hugely grateful to Sarah for all her fantastic work at the BDFA during her time with us and for her dedication to supporting families in our community in her role in Fundraising. She will be greatly missed. We wish Sarah all the best and every success in her new role. 🧡

🔸Childhood Dementia in Scotland Report Launched Today🔸BDFA is proud to be part of the team that has developed the Childh...
10/12/2025

🔸Childhood Dementia in Scotland Report Launched Today🔸

BDFA is proud to be part of the team that has developed the Childhood Dementia Scotland report launched today.

Childhood dementia is poorly understood and is caused by more than 145 rare genetic disorders which are progressive and life limiting. Batten Disease is one of the most prevalent of these genetic disorders.

In December 2024, a collaborative partnership, ‘Childhood Dementia Scotland’ led by Alzheimers Scotland with organisations from Scotland and across the UK started to address the challenges around childhood dementia. This includes researchers, academics, BDFA and other groups that work with rarer dementias.

You can access the full report via our website- https://bdfa-uk.org.uk/news/childhood-dementia-scotland-report-launched-today

09/12/2025

🌟£22,242 raised through our Big Give Christmas Challenge!🌟

A grand total of £22,242.50 including Gift Aid has been raised in one week through our 2025 Big Give Christmas Challenge campaign.

We would like to sincerely thank our community for your support in raising this phenomenal total, which will fund our Family Wellbeing Service and Sibling Support Project for over 6 months. Our Family Wellbeing Service provides counselling and therapeutic support for family members and we are expanding the service to include more focused support for older siblings.

We increased our campaign target once again this year, and we are deeply grateful to have exceeded our target for the fourth year in a row, a true testament to the power of community.

We extend our heartfelt thanks to our generous Pledgers, along with our Champion Funder, The Hospital Saturday Fund for matching the donations received and without whom this campaign would not be possible. Thank you all.

Thank you to the families who so powerfully shared their stories and what these BDFA services mean to them. And thank you to everyone who supported our campaign by sharing our posts and spreading awareness.

Finally, we would like to say an enormous thank you to everyone who so kindly donated to our campaign this year, every penny is so truly appreciated. Our biggest total ever!

From the bottom of our hearts, THANK YOU! Together we WILL make a difference.🧡

09/12/2025

⭐3 Hours to Go!⭐

It’s the final day of our Big Give and we want to start by saying a huge THANK YOU🧡

Liz Brownnutt, BDFA CEO, shares how much your donations mean to the BDFA and how they will support our Family Wellbeing Service and Sibling Support Project in the video below.

Thank you SO much to everyone who has shared, supported and donated to our campaign, it means the world to us.

We are so excited to share our grand total later today, but there are still 3 HOURS left if you would like to make a donation here: https://donate.biggive.org/campaign/a05WS0000064RiwYAE

Thank you!🧡🌟

We have less than 24 hours left of our Big Give ! ✨💫We are thrilled to have raised the funds to expand our Family Wellb...
08/12/2025

We have less than 24 hours left of our Big Give ! ✨💫

We are thrilled to have raised the funds to expand our Family Wellbeing Service to include more focused support for older siblings.

In the images below, Sarah Dodkin shares how our sibling support has helped her son Arthur, whose brothers Finley and Harrison have CLN3.

We’re so grateful to Sarah, and all the families who have shared what this service means to them and how valuable your donations really are.🧡

There’s still time to get involved, our campaign ends at midday tomorrow - https://donate.biggive.org/campaign/a05WS0000064RiwYAE

Thank you so much for your support. ⭐🧡

We have now raised over £20,000 through our Big Give 👏🎅🌟Wow.🧡We can't thank our kind supporters enough for your genero...
08/12/2025

We have now raised over £20,000 through our Big Give 👏🎅🌟

Wow.🧡

We can't thank our kind supporters enough for your generous donations, meaning we have secured more than 6 months funding for our Family Wellbeing Service and Sibling Support Project.

We commission The Maypole Project to deliver this service, which is invaluable to families in our community.

Our campaign ends at midday tomorrow. Every penny counts and no donation is too small. Please keep sharing and donating if you can, and let’s see how much we can raise in one week to go towards this vital service.

Donate here: https://donate.biggive.org/campaign/a05WS0000064RiwYAE

🧡🎄🌟🎅

07/12/2025

🎄Final 48 hours of our Big Give Christmas Challenge🎄

We have just two days left to keep pushing for our highest ever Big Give Christmas Challenge total!

The more we raise over our target, the higher chance we have at winning a Big Give award and cash prize! No donation is too small.🧡

Please watch Hayley’s video below, as she shares how this service has been a lifeline for her and her family.

Donate here: https://donate.biggive.org/campaign/a05WS0000064RiwYAE ✨🎅🌟

4 days down, 3 to go!💫We have just 3 days left of our Big Give Christmas Challenge, which ends at midday on Tuesday 9th ...
06/12/2025

4 days down, 3 to go!💫

We have just 3 days left of our Big Give Christmas Challenge, which ends at midday on Tuesday 9th December.🎅🎄

Please take a moment to read Zahra’s story in the images below, where she highlights how our Family Wellbeing Service and Sibling Support has positively impacted her. Thank you Zahra for sharing.🧡

We may have hit our target but every donation counts! Donate here: https://donate.biggive.org/campaign/a05WS0000064RiwYAE

05/12/2025

🌟🌟Over £19,000 raised!🌟🌟

We are over the moon to have exceeded our Big Give Christmas Challenge 2025 target of £18,000! The power of community.🧡

This means we have secured 6 months funding for our Family Wellbeing Service and Sibling Support Project, which we will be able to extend further the more we raise. So let’s not stop there!

Please take a moment to watch the video below, where Arthur Dodkin, brother to Finley and Harrison, shares how our sibling support has helped him. Thank you Arthur for sharing and to the Dodkin’s fantastic family fundraising community who are one of campaign pledgers.🧡

We would like to take a moment to sincerely thank all our wonderful pledgers, who helped to make up our matched funding pot and made this campaign possible.

Can we hit £20,000?! Donate here: https://donate.biggive.org/campaign/a05WS0000064RiwYAE 🎅🎄✨

Address

BDFA, PO Box 379
London
BD189GE

Telephone

+447354486586

Website

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