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.

28/08/2026

This weekend is a busy one for our incredible fundraisers! 💫

As well as Louise, who we introduced yesterday, we also have a wonderful group of people who are planning to walk all 86 miles of the Norfolk coast line in aid of the BDFA and in honour of Alfie, who lives with CLN1 Batten disease.

Over the past few years Alfie's family and friends have shown extraordinary support for the BDFA and for all of the very special families we support by taking on many different fundraising events and challenges.

We couldn't be more grateful to them, and to everyone who takes the time to donate. There really is no community like the Batten community 🧡

If you would like to show your support, please follow the link to the teams fundraising page: https://www.justgiving.com/page/benjamin-macintyre-2?utm_campaign=lc_frp_share_transaction_fundraiser_page_launched&utm_content=0c0b617e-528f-44fd-a976-cd8237e5beee&utm_medium=email&utm_source=postoffice&utm_term=1781681619512

27/08/2026

This weekend, Louise is challenging herself to climb the highest mountains of England, Scotland and Wales within 24 hours, in aid of the BDFA and in memory of her mum.

Louise's mum very sadly passed away as a result of CLN4, an extremely rare type of Batten disease (sometimes referred to as Kufs disease) in which symptoms don’t usually appear until patients reach around the age of 30.

If you would like to support Louise in her fundraising, you can do so here: https://www.justgiving.com/page/lous3peaksncl

Good luck, Louise - we will all be cheering you on! 🧡

21/08/2026

We would like to wish Claire the best of luck with her 25km walk tomorrow!

She is taking part in the London Summer Walk in aid of the BDFA and in memory of her friend Ben. 🧡

You can read more about her story below and donate to her fundraiser here: https://www.justgiving.com/page/claire-dobson-1

Thank you so much Claire for your continued support and to everyone who has donated to her fundraising page so far - it means the world to us and to the families we support.

18/08/2026

Did you know that…..?

BDFA works in partnership with national alliances and collaborative networks that are driving improvements in diagnosis, care pathways, research, and access to treatments for people living with Batten disease and other rare conditions.

Our advocacy focuses on ensuring that the needs of the Batten disease community are represented in discussions around neurology, lysosomal storage disorders (L*Ds), childhood dementia, and wider rare disease policy. We work alongside organisations including Genetic Alliance, the Neurological Alliance, the Specialist Health Care Alliance, the L*D Collaborative, the Newborn Screening Collaborative, the Patient Professional Partnership Network, and the Childhood Dementia Initiative.

By collaborating with other patient organisations, clinicians, researchers, and policymakers, we strengthen the voice of the Batten disease community and work to influence policies that improve diagnosis, access to innovative medicines and treatments, and the quality of care for individuals and families affected by Batten disease.

If you would like to learn more about BDFA’s advocacy and policy work, please contact Liz Brownnutt, CEO, [email protected]

13/08/2026

🔬The first edition of the BDFA Scientific Affairs & Research Newsletter is here! 🔬

Stay up to date with the latest developments in Batten disease scientific and clinical research, and learn more about the work taking place to improve understanding, care and future treatments.

This is the first of what we hope will be a regular update for the Batten disease community, and we'd love to hear your feedback.

Read the newsletter here: https://bdfa-uk.org.uk/news/introducing-first-bdfa-scientific-affairs-research-newsletter

08/08/2026

We are pleased to share this beautiful video created by Cassey, friend of Rosie's parents, who has been working hard to organise a fantastic group of fundraisers taking part in the Thames Path Ultra Challenge in aid of the BDFA this September! 🧡 You can support Team Rosie by donating to their fundraiser here: https://www.justgiving.com/team/team-rosie

07/08/2026

Families with a Batten disease diagnosis are often overwhelmed trying to manage a range of different medical specialities. There is no dedicated long-term improvement plan for neurological health and care services in England.

That is why The Neurological Alliance is calling on the government to introduce a Modern Service Framework for neurological conditions, to improve access to services, reduce emergency admissions, and reduce health complications.

BDFA is supporting this campaign and you can help by signing the petition here: https://ow.ly/OHof50Zu5Q8

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

Address

BDFA, PO Box 379
London
BD189GE

Telephone

+447354486586

Website

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

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