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.

We are here to support families affected by Batten Disease, to give support to professional carers and fund research to find a cure.

🔶We are seeking an experienced and dynamic Fundraising Officer to join our team! 🔶 We’re looking for an individual who h...
19/11/2025

🔶We are seeking an experienced and dynamic Fundraising Officer to join our team! 🔶

We’re looking for an individual who has some experience in fundraising, particularly leading on all aspects of community fundraising, developing and nurturing relationships with volunteer fundraising groups and individual supporters, if that sounds like you, we would love to hear from you!
Apply by: Friday 15th December

To see more about the role and apply, click on the link below, https://www.charityjob.co.uk/jobs/the-batten-disease-family-association-cio/fundraising-officer/1045983?tsId=8

🌟🎅TWO weeks to GO🎅🌟We are so excited for our Big Give Christmas Challenge which begins 2 weeks today!Remember that from ...
18/11/2025

🌟🎅TWO weeks to GO🎅🌟

We are so excited for our Big Give Christmas Challenge which begins 2 weeks today!

Remember that from midday on Tuesday 2nd December - midday Tuesday 9th December donations made to our campaign page will be doubled!⭐⭐

We would like to take this opportunity to say a heartfelt thank you to our generous pledgers who have contributed to our matched funding pot and without whom this campaign would not be possible.🧡

If you are planning a fundraiser for the BDFA or wishing to make a donation towards our work this Christmas then please consider doing so during Big Give week, when your donation will be doubled and make twice the difference to us.

We are raising funds for our Family Wellbeing Service and Sibling Support Project. Visit our campaign page to find out more here: https://donate.biggive.org/campaign/a05WS0000064RiwYAE

Please share! And remember, one donation, twice the impact!🧡✨🎄

🎅NEW BDFA Merchandise & Christmas Cards – Available Now 🎅🛍 We are pleased to share we have some amazing new items now av...
12/11/2025

🎅NEW BDFA Merchandise & Christmas Cards – Available Now 🎅

🛍 We are pleased to share we have some amazing new items now available in our online shop.
This includes our highly requested car window stickers which can be purchased in two designs, so you can raise awareness of Batten disease whilst on the road and the new enamel orange ribbon pin badge. 🎗

🎄Our 2025 BDFA Christmas cards are also on sale now. Send season’s greetings and support the BDFA this festive season. 🎄

All money raised via our online shop goes towards the important work of the BDFA, as we continue to provide the best possible support and care to families living with a diagnosis of Batten disease.

Shop here: https://www.bdfa-uk.org.uk/shop

Together we will make a difference.

🧡Fabulous Fundraisers🧡We would like to say a huge ‘THANK YOU’ to Pam and Gary Turner and Harwood Golf Club for raising f...
12/11/2025

🧡Fabulous Fundraisers🧡

We would like to say a huge ‘THANK YOU’ to Pam and Gary Turner and Harwood Golf Club for raising fantastic funds in aid of the BDFA at their coffee morning.

Pam set up an incredibly orange stall, including homemade orange marmalade and raised so much awareness of Batten disease and the BDFA, in loving memory of her son Robert.

We are so grateful to Pam, Gary and all at Harwood Golf Club for their continued efforts and very kind support. Thank you!👏🧡

🌟3 weeks to go until your donation could be DOUBLED!🌟It’s just 3 weeks until our Big Give Christmas Challenge campaign g...
11/11/2025

🌟3 weeks to go until your donation could be DOUBLED!🌟

It’s just 3 weeks until our Big Give Christmas Challenge campaign goes live at midday on Tuesday 2nd December.

We will have just one week to hit our £18,000 target to go towards our Family Wellbeing Service and Sibling Support Project.

Our Family Wellbeing Service provides specialist counselling and therapeutic support for family members. Available to all families in our community, the BDFA commissions The Maypole Project to deliver tailored support to the family’s specific needs, including one to one, couple, family, and children’s therapies and specialist sibling support.

We need to maintain the service and expand it to include more focused support for older siblings to help them cope with life changes, such as college and university.

Donations made to our campaign via our page on the Big Give website, https://donate.biggive.org/campaign/a05WS0000064RiwYAE will be matched for 7 days until we hit our target, from midday on Tuesday 2nd December to midday on Tuesday 9th December.

If you would like to support our work this year, we highly recommend doing so during the Christmas Challenge, when your donation will make double the difference.

One donation, twice the impact!✨💫🧡🧡

🧡Fabulous Fundraisers🧡We would like to say a huge ‘THANK YOU’ to Helen Herridge for organising a bake sale at her co-wor...
06/11/2025

🧡Fabulous Fundraisers🧡

We would like to say a huge ‘THANK YOU’ to Helen Herridge for organising a bake sale at her co-working office in aid of the BDFA.

Helen was inspired to raise funds after picking up a BDFA leaflet at an event and we are so grateful to our supporters for raising such vital awareness, and to Helen for continuing to spread this awareness of Batten disease and the BDFA.

A huge thank you to Helen and her colleagues for all their efforts and generous donations, this support is truly appreciated.

Thank you!🧁🧡

We are delighted to share that the BDFA has been selected as a recipient of Bank ABC’s 2025 donation programme. We would...
04/11/2025

We are delighted to share that the BDFA has been selected as a recipient of Bank ABC’s 2025 donation programme.

We would like to express our sincere thanks to Phil Valle, dad to Amy, who nominated the BDFA to receive this incredible grant of £24,242.

We are deeply grateful to Phil, and all family and friends in our community, who promote our work through their companies, resulting in much-needed financial support. This enables us to continue our work in supporting families affected by Batten disease through support and advocacy, family wellbeing, and scientific affairs and research.

We extend our gratitude to the Bank ABCIB Donation Committee for recognising the impact of our work and awarding the BDFA this donation.

Thank you Phil and Bank ABC. Together we will make a difference.🧡

We are delighted that Jo Nightingale, our Head of Scientific Affairs, is currently attending the 19th NCL Congress in Au...
30/10/2025

We are delighted that Jo Nightingale, our Head of Scientific Affairs, is currently attending the 19th NCL Congress in Australia on behalf of the BDFA where she is presenting data on our work. NCL Congress is the premier conference in Batten disease, which brings together world-leading researchers, healthcare providers, industry partners, innovators and patient advocacy leaders from around the globe. Jo will be writing a summary of the conference sessions, presentations and posters on NCL research for families when she returns.

👨‍🍳👩‍🍳Our BDFA Family Cooking Session was led this time by Eli Archbold, his carer Rachel and mum Sarah.Eli showed us ho...
29/10/2025

👨‍🍳👩‍🍳Our BDFA Family Cooking Session was led this time by Eli Archbold, his carer Rachel and mum Sarah.

Eli showed us how to make sausage rolls, which turned out to be delicious!
We loved seeing parents, children, siblings and carers all joining in. We can’t wait for the next session!

✨🎅SAVE THE DATE! Big Give Christmas Challenge 2025🎅✨ ⭐️Double your Donations from Midday Tuesday 2nd December to Midday ...
21/10/2025

✨🎅SAVE THE DATE! Big Give Christmas Challenge 2025🎅✨

⭐️Double your Donations from Midday Tuesday 2nd December to Midday Tuesday 9th December.⭐️

We are very excited to announce that the BDFA has been selected again this year to participate in the Big Give Christmas Challenge, the UK’s largest match-funding campaign!

This year we will be raising funds for our Family Wellbeing Service and Sibling Support Service. You can view our campaign page here: https://donate.biggive.org/campaign/a05WS0000064RiwYAE

After another very successful campaign last year thanks to our generous supporters, we are thrilled to have set our 2025 target at £18,000!

We have 6 weeks to go until donations made via our campaign page will be matched for 7 days.

If you would like to support our work this year, we highly recommend doing so during the Christmas Challenge, when your donation will be doubled.

One donation, twice the impact.🧡🧡

🧡Fabulous Fundraisers🧡We would like to say a massive ‘WELL DONE’ to Alison Hopwood and Donna Wallis for completing the S...
20/10/2025

🧡Fabulous Fundraisers🧡

We would like to say a massive ‘WELL DONE’ to Alison Hopwood and Donna Wallis for completing the Stevenage Half Marathon yesterday!👏

It was a challenging and emotional yet amazing day for Alison and Donna and we hope they are feeling so proud of what they have achieved inspired by the Yarrow family, who were there to cheer them over the finish line!

We are so grateful to Donna and Alison for choosing to run in aid of the BDFA and for all their incredible efforts. Congratulations both!👏🏃🧡

🧡Fabulous Fundraisers🧡We are so pleased to introduce and wish the very best of luck to Donna Wallis and Alison Hopwood w...
17/10/2025

🧡Fabulous Fundraisers🧡

We are so pleased to introduce and wish the very best of luck to Donna Wallis and Alison Hopwood who will be running the Stevenage Half Marathon on Sunday in aid of the BDFA.

Donna and Alison kindly shared with us: “Our inspiration for our half marathon run has come from a personal level where we have connections with the family from Royston, who touched our hearts and made us want to raise awareness for a very rare disease and that hasn't really had very much media attention and we just felt it was something that we wanted to do in a hope that more research and development could be done. Training has been hard especially through the summer in the hot weather but we have reached full potential. We will do the best we can and at the end of it there’ll be a Prosecco!”

We are super grateful for Donna and Alison’s efforts in both their fundraising and training. If you’d like to show your support, here is the link to their fundraising page – https://www.justgiving.com/page/alison-hopwood-4?utm_medium=FR&utm_source=WA

Good luck Donna and Alison! We can’t wait to hear how you get on👏🏃🧡

Address

BDFA, PO Box 379
London
BD189GE

Telephone

+447354486586

Website

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