Batten Disease Family Association

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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.

29/07/2026

Dear Families,

A little reminder of Arthurs Gift, an amazing initiative where nominated Batten siblings can receive a gift from Arthur.

If you would like to nominate a sibling, please click on the link here.
https://form.jotform.com/233623418501348 See less

28/07/2026

We had a great time today learning how to make banana bread, with Logan, Ethan & Danie at our BDFA Family Cooking Session.
There were even some chocolate-chips thrown in the mix!
Our Family Cooking Sessions are held during the school holidays.
If you and your children would like to run a session, please get in touch with Mimi.
[email protected]

22/07/2026

The BDFA are so pleased to be able to offer our first in-person event for our bereaved community.

When: Saturday 31st October – Sunday 1st November 2026

Where: Meeting at the Premier Inn London Kew Bridge hotel, Brentford, London

We understand that being a Batten parent doesn’t stop when a child dies; their light never leaves us.
We want to offer a space where bereaved parents can come together, meet each other and share a connection that is hard to understand unless you’ve been through it.

This event will be very special to us, and we hope to you as well. In the week leading up to it, we will have a Remembrance Week, where we’ll invite you to share your memories on our dedicated remembrance page (to be renamed by you, via a poll).

Our weekend away together will start after check-in when we go to Kew Gardens, a beautiful place to chat, walk, sit and connect.

Our evening dinner gives us another relaxed space to enjoy each other’s company and on Sunday morning we will gather round our Tree of Light and remember the children. You will be invited to place your child’s star on the tree and a tealight (battery operated health and safety!) underneath.
You can find further information about the plans for the weekend on the booking page below.

Throughout the weekend we will share ideas to take forward, as we want these weekends to belong to you and be shaped by you, the parents who have supported us and taught us so much.

To book tickets for this event, click the link below which will take you to the booking site. When booking your ticket please select to book a room so these can be allocated. If you have any issues booking your tickets, please contact [email protected].

BOOK YOUR TICKETS HERE- https://www.eventbrite.co.uk/e/bdfa-bereaved-parents-weekend-away-tickets-1994203930639

21/07/2026

📢 Volunteer Trustee Opportunity – Treasurer urgently Needed

The Batten Disease Family Association (BDFA) is seeking a Treasurer/Trustee to join our passionate and dedicated Board of Trustees.
🔸This rewarding role offers the opportunity to help shape the strategic direction of the charity, support strong governance, and make a meaningful difference to children, young people, and families affected by Batten disease across the UK.
🔸As Treasurer, you will help oversee the organisation’s financial affairs, support financial sustainability, and ensure appropriate financial procedures and records are maintained.
🔸If you have financial experience and are looking to use your skills to support an important cause, we’d love to hear from you.

For more about the role and to apply click the link
https://www.charityjob.co.uk/volunteer-jobs/the-batten-disease-family-association-cio/treasurer-board-of-trustees-for-childrens-charity/1077236?tsId=36

Please share this with anyone who you think might be interested in this volunteer role. Thanks!

25/06/2026

🔸📆BDFA is planning an in person event for our bereaved community 📆🔸

An opportunity for parents who have lost children to Batten disease to come together, reminisce and make connections.

Our first event is scheduled for the weekend of Saturday 31st October to Sunday 1st November in Richmond upon Thames, just outside London.
We are working with local hotels to secure best rates and aim to part fund Saturday night hotel costs and provide an evening meal for those wishing to attend.

The event is open to bereaved parents who reside in the UK and are registered or would like to register with BDFA.
We welcome enquiries and expressions of interest in this event.
Please email [email protected]

Final information and booking detail will be forthcoming.

23/06/2026

🕯🕯 BDFA ‘s virtual support group for bereaved parents 🕯🕯
➡Our next meeting for parents and carers - Tuesday 30th June 7.30 to 9pm

Called ‘Reflections’, we started in March 2025 supporting a small group of more newly bereaved mum’s and would like to extend this to all bereaved parents.
We understand how deeply the loss of a child from Batten affects families, it touches every aspect of daily life, takes almost superhuman energy to navigate, but brings you the most amazing, resilient and loving children.
Within this group you can share memories, find comfort and connect with others who understand your journey.

Our group sessions run monthly using Microsoft Teams.

If you would like to attend or need more information please contact [email protected]

To join the session, click the link and then click the join button on the right hand side
https://bdfa-uk.org.uk/community/family-community/reflections-bdfa-s-virtual-support-group-bereaved-parents-1

21/06/2026

We are sending love to all of the amazing dads and granddads in our Batten community this Father's day. 💙

Those of whom this is their first Fathers day as a parent of a child with Batten disease, those providing care for their child today and not able to take a break and those caring for their child in hospital.

Our thoughts are especially with all of those grieving the loss of their child or children to Batten disease.
We are sending love to you all 🧡

17/06/2026

📢 Volunteer Trustee Opportunity – Treasurer Needed

The Batten Disease Family Association (BDFA) is seeking a Treasurer/Trustee to join our passionate and dedicated Board of Trustees.

🔸This rewarding role offers the opportunity to help shape the strategic direction of the charity, support strong governance, and make a meaningful difference to children, young people, and families affected by Batten disease across the UK.
🔸As Treasurer, you will help oversee the organisation’s financial affairs, support financial sustainability, and ensure appropriate financial procedures and records are maintained.
🔸If you have financial experience and are looking to use your skills to support an important cause, we’d love to hear from you.
For more about the role and to apply click the link https://bdfa-uk.org.uk/treasurer-board-of-trustees

16/06/2026

We're thrilled to share that we have raised £6,737 through our Big Give Awareness Day campaign - with Gift Aid, that brings our grand total an INCREDIBLE £7,733! 🤩

This would not have been possible without our generous pledgers, who together made up our match-funding pot - THANK YOU! 🌟

And of course, to each and every one of you who donated to the campaign when it was live, who shared the link, who got on with your own fundraising events and added what you raised to the total - thank you SO much. We are truly so grateful. Our community's continued enthusiasm and support means so much to us.

Together we will make a difference.🧡

14/06/2026

Today is the final day of our Big Give Batten Disease Awareness Day campaign! 🧡

Your donations help us stand with families affected by Batten disease through some of the most challenging times of their lives.

DONATE HERE: https://donate.biggive.org/campaign/a05WS00000EmkQHYAZ

Please note our campaign page closes at 8pm tonight!

Address

BDFA, PO Box 379
London
BD189GE

Telephone

+447354486586

Website

http://www.bdfa-uk.org.uk/

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