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.

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

26/09/2025

🏃‍♀️Runners’ Round Up🏃

We are pleased to introduce our final runners on Team BDFA for the 2025 Cardiff Half Marathon, Tim and Rhian Burn.

Tim and Rhian kindly shared their inspiration for taking on this challenge with us:

'It's a real privilege to be running for the BDFA and for a cause that's really close to our hearts. A few years ago, our good friends Emily and James' daughter Holly was diagnosed with Batten disease, followed soon after by her younger brother, and my godson, Max. We are doing this for these two incredible, brave, and beautiful children, and for all the other children and families affected by Batten disease.”

We are so grateful to have Rhian and Tim representing the BDFA and for all their efforts. If you’d like to show them support, here are their fundraising pages: https://cardiffhalf25.enthuse.com/pf/rhian-burn https://cardiffhalf25.enthuse.com/pf/timothy-burn

Good luck Tim and Rhian! 👏🏃💛

25/09/2025

🏃Runners’ Round Up🏃‍♀️

The 10 day countdown is on for the Cardiff Half Marathon on October 5th!

We are thrilled to introduce our third runner, Ollie Nayler. Ollie is running inspired by his cousin Holly, he shared:

“I’m taking part to support my cousin Holly who was diagnosed in 2024 and give back for the support the BDFA have given my family.”

We are so grateful for all Ollie’s efforts so far. Here is the link to his fundraising page if you’d like to show your support – https://cardiffhalf25.enthuse.com/pf/oliver-nayler

Good luck Ollie! 👏🏃🧡

24/09/2025

🏃‍♀️Runners’ Round Up🏃

The Cardiff Half Marathon is one of Europe’s largest half marathons and we are thrilled to be being represented in this race through the Welsh capital.

We are pleased to introduce our second runner on , Noah King. Noah kindly shared with us how his friend and runner Gareth has inspired him to take part:

“The reason I'm running is Gareth is a friend of mine and seeing him run when he's not felt motivated all for his nephew and niece is incredible. I feel like it's an amazing charity and everyone dealing with Batten disease is extremely brave. I want to do all I can to help!”

We hugely appreciate Noah’s support for the BDFA and for being such a supportive friend. Here is the link to Noah’s fundraising page – https://cardiffhalf25.enthuse.com/pf/noah-king-44bfd

Good luck Noah! 👏🏃🧡

23/09/2025

🏃‍♀️Runners’ Round Up🏃

We are so excited to have entered a BDFA Team into the 2025 Cardiff Half Marathon, taking place on Sunday 5th October.

We are delighted to introduce our first runner on , Gareth McRea. Gareth also ran this race in aid of the BDFA in 2023 and he kindly shared with us his motivation for taking on this challenge once again:

“I can’t wait to run this year’s Cardiff Half Marathon to help raise money for BDFA. My cousin’s children, Holly (6 years old) and Max (4 years old) are an enormous inspiration to me. I love them dearly and it was frightening when the children first started getting ill, not knowing what the condition. When the symptoms got worse it was so heartbreaking to see the changes in them.
My cousin, James, and his wife Emily are amazing parents. Strong and compassionate, they care so much about their children and the rest of our family.
Lots of love to all the parents and families with Batten children.”

We are thrilled to have Gareth represent the BDFA for a second time and we hugely appreciate his continued support. If you’d like to show your support to Gareth, here is the link to his fundraising page – https://cardiffhalf25.enthuse.com/pf/gareth-mcrea

Good luck Gareth! 👏🏃🧡

22/09/2025

🌟BDFA Family Day 2025🌟

On Saturday 13th September, the BDFA hosted our first Family Day at Temple Newsam. We were delighted to have the opportunity to bring families together at this wonderful venue, allowing parents, children and siblings to spend quality time together and connect in person.

It was a lovely day with great food, fantastic farm animals and a brand new play barn!

Read our full blog about the day on our website here: https://www.bdfa-uk.org.uk/news/bdfa-first-family-day-2025-temple-newsam

Thank you so much to the team and to our families for joining us!🧡

18/09/2025

Thank you for joining us in raising awareness and sharing photos for Childhood Dementia Day yesterday.

The BDFA are proud to stand with the Childhood Dementia Initiative (Aus) in their Face It Campaign.💛

17/09/2025

Childhood dementia in Batten disease can deeply affect a child's development and well-being.
One of the early signs is communication difficulties, which can make it harder for children to express themselves and interact with others.

17/09/2025

FACE it is a bold global campaign that shines a light on this devastating condition and shows families they are not alone.

17/09/2025

Parents Face it every day, having to plan every routine, meal, bath time, bedtime to help their children cope.

BDFA stands alongside Parents to Face It, supporting and advocating and providing education and training for the teams around the children.

This is Effie 🌟Thanks for this beautiful photo for Childhood dementia day!

17/09/2025

⭐Next up for to for Childhood dementia day is Robbie! ⭐

Children and young people with Batten disease Face It every day, it can make them tired, irritable, frustrated, scared, anxious or angry

17/09/2025

Childhood dementia results from progressive brain damage and is caused by over 100 rare genetic disorders, including all types of CLN Batten disease. Each child’s experience with dementia is unique. In some instances, dementia symptoms can appear in the youngest of children and babies and progress quickly.
While for other children, symptoms may not start until they are teenagers or young adults. Childhood dementia is progressive.

17/09/2025

One of the biggest problems: most people don't know childhood dementia exists. Childhood dementia remains largely unknown and overlooked. As a result, children & families are isolated fighting for support & understanding.

Thanks for sharing this amazing photo Joshua!

Address

BDFA, PO Box 379, Shipley
London
BD189GE

Telephone

+447354486586

Website

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

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