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.

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!

13/06/2026

Your donations help us stand alongside families, navigate challenges, and ensure no one faces Batten disease alone.

This is what your support makes possible. 🧡

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

12/06/2026

The sustainability of our services is incredibly important, and we rely on the generosity of our brilliant community of supporters to secure this! 🧡

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

11/06/2026

Knowledge leads to awareness, awareness leads to change 🧡

Your donation helps us to continue learning, sharing, and educating others about Batten disease.

Be part of that impact today!

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

11/06/2026

🔸REMINDER to Join us for the BDFA AGM- Saturday 13th June 2026, 10:30am 🔸

We really do hope that you will be able to join us at the event, the AGM is a legal requirement and held annually and we require as many members and families to join us as possible to enable the charity to move forward.
The meeting will be no more than 1 hour.

We need a minimum of 3 families/ supporters to attend for us to be able to run the meeting in accordance with our constitution.

The BDFA Trustees and team invite you to attend it's Annual general meeting 2026.
NOTICE IS HEREBY GIVEN that the 2026 Annual General Meeting of the Batten Disease Family Association CIO will be held via a Zoom video on 10:30am on Saturday 13th June 2026.

To participate please click on the link to the event on our website and click ‘join now’ https://bdfa-uk.org.uk/com.../family-community/bdfa-agm-2026

11/06/2026

Your support powers everything we do 🧡

From leadership to frontline services, your donations make the work of the BDFA possible.

Help us keep going!

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

10/06/2026

Services like our Peer Befriending programme show just how powerful shared understanding can be 🧡

This is what your support makes possible!

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

Address

BDFA, PO Box 379
London
BD189GE

Telephone

+447354486586

Website

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

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