Batten Disease Family Association

10/04/2026

📍Support the Future for Rare Campaign Survey 📍

The Future for Rare survey is designed to capture a comprehensive picture of the current experiences and priorities of the genetic, rare and undiagnosed community across the UK.

Complete the 'Future for Rare' survey:
https://www.smartsurvey.co.uk/s/future-for-rare/

We welcome views from everyone, whether you are living with a genetic, rare and undiagnosed condition, caring for a loved one, or working for a support organisation, as a researcher or a healthcare professional. Every perspective is valued equally and will directly inform our recommendations to all four governments.

Please consider helping BDFA to support this important campaign by completing the survey by Friday 24 April 2026.

For more information on how this information will inform the campaign, please visit the Future for Rare webpage. https://geneticalliance.org.uk/future-for-rare/

09/04/2026

Danie, Logan & Ethan led our BDFA Family Cooking session on Zoom yesterday, where we made chocolate Easter nests. It was hard work breaking up the shredded wheat, but worth it!
Thank you to all who joined us! 🐣🐣

01/04/2026

BioXconomy Article - CLN3 News

In November 2025, the BDFA was approached by BioXconomy, an online media site that engages the industry, builds community, and connects life sciences professionals to current, credible information, products and services relevant to their business, for a statement in relation to a recent publication. This was about the use of antisense oligonucleotides in pig models to mitigate retinal dysfunction by the Hastings group in Michigan.

Read more about the article here-

1 April, 2026 BioXconomy Article about CLN3 In November 2025, the BDFA was approached by BioXconomy, an online media site that engages the industry, builds community, and connects life sciences professionals to current, credible information, products and services relevant to their business, for a st...

29/03/2026

There are only 4 weeks to go until the London Marathon! 🏃‍♂️✨

We’re so proud to share the story of Sean Wheatley, a Dad from the Batten community who is running the 2026 TCS London Marathon in support of the BDFA after his son Wilf was diagnosed with CLN2 Batten disease.

Learn more about why he’s taking on the London Marathon for the BDFA and how you can support him here: https://bdfa-uk.org.uk/news/262-miles-bdfa-seans-london-marathon-journey

26/03/2026

🔸Childhood Dementia Scotland🔸

BDFA is delighted to share important news following the collaborative work led by Alzheimer’s Scotland and supported by professionals and charities in the field including BDFA and Scottish parents of children affected by Batten disease.

The Childhood dementia Scotland report would not have had its strong impact without the addition of parent voices, their presence and contributions to meetings at Holyrood.

Yesterday evening the Scottish Government put out a statement from the Health Minister Neil Gray to announce funding of 2 Childhood dementia Officer posts, the first funding of its kind in the UK.

This will enable a strategic plan to be developed and implemented, identifying stake holders across Scotland and shaping policy in this area, BDFA continues to work within the collaborative, and with our understanding of childhood dementia in Batten to be able to help shape these processes.

Link to the announcement:

Dedicated specialist support for affected families.

23/03/2026

🏃Runners Round Up🏃

Meet Liam, who has taken on an incredible challenge this March - running 100 miles to support the BDFA!

He’s already smashed past 60 miles and reached 70% of his fundraising target… all while being cheered on by his running buddy, Bear 🐶

Liam was inspired to take on this challenge after seeing others fundraise in March and through his close friends and their little boy Josh, who lives with Batten disease. Their journey inspired him to run for the BDFA.

Every mile he runs and every pound raised helps us continue supporting families affected by Batten disease - and we're so grateful for his hard work!

If you’d like to donate to Liam's fundraiser, you can visit his page here:
👉 https://www.justgiving.com/page/liam-athope-1

Thank you, Liam (and Bear!), for every step you’re taking for our community. 🧡

20/03/2026

✨ 🏃Run the Great North Run for the BDFA! (limited charity places available)

We have teamed up with the Nicole and Jessica Rich Foundation again this year and we’re so excited to have 3 charity places on offer for the ICONIC Great North Run 2026!

By joining Team BDFA, you’ll receive:
🧡Fundraising support
🧡A cheering squad on the day
🧡A chance to take on a fantastic personal challenge and be a part of making a real difference for the Batten Community

Minimum fundraising target is £750, and places are open to families, friends, and anyone else who wants to support the BDFA’s work. Please share to help spread the word!

Every mile you run will help us support children, young people and families affected by Batten disease - raising awareness, providing emotional support, practical guidance and vital advocacy.

If you’re interested, please drop us an email: fundraising@bdfa-uk.org.uk.

18/03/2026

🔸BDFA ‘s virtual support group for bereaved parents- NEW GROUP 🔸

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.

Our next meeting for mum’s - Tuesday 24th March 7.30 to 9pm
If you would like to attend or need more information please contact support@bdfa-uk.org.uk

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

Our next meeting for mum’s and dad’s - Tuesday 24th April 7.30-9pm

15/03/2026

🩷🧡🩷 We are thinking of all the mothers in our community today. For those, for whom this is their first mother’s day as the mother of a child or children with Batten disease, those in hospital today with their poorly child or young person and those who are still providing full care today and are not able to take a break.
We are thinking too of all the grandmothers in our Batten community.

Most of all, we are thinking of those who have lost their child or children to Batten disease, we are thinking of you especially today and sending our love. 🩷🧡🩷

09/03/2026

🏃🏅They did it!!

A massive WELL DONE to Jo, Adam, and Katy, who completed the Cambridge Half Marathon yesterday in support of the BDFA! 🎉

We are incredibly proud of each of them, not only for completing the race, but for taking on such a personal and meaningful challenge. Your courage, commitment, and willingness to push beyond your comfort zones is truly inspiring.

Thank you, Jo, Adam and Katy, for dedicating your miles to raising awareness of Batten disease and supporting families affected by Batten disease across the UK. Every step you took helps ensure that no family walks this journey alone.

And thank you to everyone who has donated, shared and cheered them on - your makes all the difference!

You can still donate to their fundraising pages here:
🔗 Jo: https://www.justgiving.com/page/joanna-nightingale-4
🔗 Adam: https://www.justgiving.com/page/adam-herman-1
🔗 Katy: https://www.justgiving.com/page/katy-derby-1

Congratulations, Team BDFA! 🧡🏃

07/03/2026

Good Luck Team BDFA!

Tomorrow is the big day! 🎉

We want to wish the very best of luck to Jo, Adam, and Katy as they take on the Cambridge Half Marathon in support of the BDFA.

Your dedication, energy, and compassion means the world to us all at the BDFA as well as the families we support. Thank you for raising awareness of Batten disease and championing the BDFA with every mile you run. 🧡

Please join us in sending your cheers and encouragement to Team BDFA!

If you’d like to support their fundraising, you can still donate here:
🔗 Jo: https://www.justgiving.com/page/joanna-nightingale-4
🔗 Adam: https://www.justgiving.com/page/adam-herman-1
🔗 Katy: https://www.justgiving.com/page/katy-derby-1

We'd like to shout out Nick Passey from our Batten community who is also running the Half tomorrow - go smash it, everyone! 🏃‍♂️🏃‍♀️✨