BDFA
@BattenDiseaseuk
Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure.
Evidence of the impact of CLN2 and CLN3 Batten disease on families in the United Kingdom publication released During 2023 and 2024, the BDFA launched a study, in partnership with a research team at the Health Policy Partnership, read more about it here- bdfa-uk.org.uk/news/evidence-…
It’s time to fix the SEND system. Too many disabled children are being failed by a broken education system. Join the #FightForOrdinary. Email your MP, tell them what needs to change.f.mtr.cool/qmyvzucfdz
🌟£7,938 raised through our BIG for Batten Awareness Campaign 2025!🌟 Wow! We would like to say a massive thank you to our incredibly generous pledgers, donors, and everyone who shared our campaign! From the bottom of our hearts, THANK YOU! Together we WILL make a difference.🧡
🌟24 hours to go BIG for Batten!🌟 We have just 24 more hours for one last BIG push! Our incredible Head of Family Support and Advocacy Sarah shares the real impact your donations will have. Donate here until 12pm tomorrow! - donate.biggive.org/campaign/a05WS… #BattenDiseaseAwareness
🌟Let’s go BIG for Batten🌟 Just two days left to donate to our Big Give Awareness Day Campaign! Here is Arienne, our wonderful Bookkeeper & Financial Admin, sharing how your donations will help! Donate here: donate.biggive.org/campaign/a05WS… #BattenDiseaseAwareness 🎗️🧡
🌟Let’s go BIG for Batten🌟 What a week so far! Here our Trusts & Foundations Fundraising Officer Phil shares how every donation will help. Donate here: donate.biggive.org/campaign/a05WS… #BattenDay2025 #BattenDiseaseAwareness 🎗️🧡
🌟£6,000 raised for our Big for Batten Awareness Day Campaign!🌟 It’s not too late to donate! Our campaign is live until 12pm on Monday. Every penny donated has a real impact, as our brilliant Head of Scientific Affairs Jo shares here. Donate here: donate.biggive.org/campaign/a05WS…🎗🧡
🌟Let’s Go BIG for Batten 2025🌟 We would LOVE to keep pushing towards £6,000, we have 4 days left! Here Sarah from our fundraising team shares the impact your support will have for the BDFA. Donate here: donate.biggive.org/campaign/a05WS… #BattenDay2025 #BattenDiseaseAwareness 🎗️🧡
🌟BIG for Batten 2025🌟 Thank you so much for all your support for our Big Give campaign so far, let’s not stop there! Can we go even BIGGER and raise £6,000 during Awareness Week 2025?! Here Lisa shares the impact of your donations.🧡 Donate here: donate.biggive.org/campaign/a05WS…
Amazing! Thank you @belfastcc for your support🧡
A big thank you to everyone at @belfastcc for supporting international Batten Disease Awareness Day, by lighting up City Hall this evening. It rounded off a great day with so many friends and colleagues showing their support. Very much appreciated 🧡🧡🧡
🎗️ 🌟 BIG for Batten 2025 🌟 🎗️ WOW!! We are blown away to have hit our £5,000 target in one day for our Big for Batten Big Give matched funding campaign! Here CEO Liz Brownnutt shares the impact your support will have for the BDFA. Donate here: lnkd.in/egmZQpk6
We’re so pleased to introduce Ethan.🧡 Ethan has a BIG smile despite all he has been through. Thank you to Ethan’s mum Danie for sharing this lovely photo. It has been the biggest pleasure for us to share these smiley faces and beautiful photos today. #BattenDay2025 🎗️🧡
Introducing Holly🧡 Thank you so much to dad James for sharing this BIG moment for Holly. James shared “she’s just got herself back up, smiled and gone let's do this and off she has gone”. Well done Holly!👏 #BattenDay2025 #BattenDiseaseAwareness 🎗️🧡
Introducing Louie who is BIG on music!🎵 Thank you to Louie’s dad Andrew for sharing “throughout all his setbacks, vision loss, having severe autism and having this devastating disease I couldn't be prouder of the young man he's turned out to be.” #BattenDay2025 🎗️🧡
Meet Connie! Connie has BIG determination🧡 Thank you to Connie’s mum, Caroline, for sharing these wonderful words. “She is the happiest, most loving little girl, she never gives up on life, despite her disability." #BattenDay2025 #BattenDiseaseAwareness 🎗️🧡
Introducing Isabel who is a BIG inspiration to all who have met her.🧡 Thank you to Isabel’s mum for sharing “Isabel has unknowingly inspired so many, by showing them what resilience really looks like." #BattenDay2025 #BattenDiseaseAwareness 🎗️🧡
Meet Fred! Thank you so much to Fred’s dad Andrew for sharing this BIG moment Fred got in the pool again. Well done Fred!👏 #BattenDay2025 #BattenDiseaseAwareness 🎗️🧡
Meet Kaycee! Kaycee has a BIG smile! Thank you so much to Kaycee’s mum Claire for sharing “Kaycee’s smile lights up anyone's day, sending their bad day into a fabulous one in seconds” We know this photo will make you smile today too! #BattenDay2025 #BattenDiseaseAwareness 🎗️🧡
Meet Eli! Thank you so much to Eli’s mum Sarah for sharing this BIG moment Eli got to share with his peers who were so kind towards him as he gave them an insight into how he sees the world. Go Eli!🌟 #BattenDay2025 #BattenDiseaseAwareness 🎗️🧡
🎗️Let’s Go BIG for Batten – International Batten Disease Awareness Day 2025🎗️ Our Big Give matched funding campaign is live and doubling donations right now: donate.biggive.org/campaign/a05WS… Huge thank you to @BeefyBotham for the continued support. Together We WILL Make a Difference.🧡