General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Registration For The BDSRA USA Annual Family Conference Open!

We are pleased to be able to offer families in our Batten community the chance to virtually attend the BDSRA family conference again this year. The last 2 years have been brilliant events and the BDSRA work so hard to…

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Bertie’s Helpers Reaches Milestone Of 100 Deliveries

We are so pleased to share this update from the amazing Bertie’s Helpers!! Bertie’s Helpers has now delivered 100 Tesco food deliveries, including good quality ready-meals, to families in the Battens community! This includes to families whose child or children…

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Important Announcement Regarding Gene Therapy Development And Follow Up Ask An Expert Session

Dear all, We have been working with our international partners, the BDSRA, BDSRA Australia and Baza Retkih Bolesti to dissect recent developments in the batten treatment space. You will have read the letter from Taysha Gene Therapies published in the…

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Important CLN1 & CLN7 Update From Taysha Gene Therapies

CLN1 & CLN7 Communities, We would like to bring to your attention this update regarding Taysha Gene Therapies involvement in both CLN1 & CLN7. We encourage you to read the community letter below from Taysha and reach out to us…

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Ever Wondered How Peer Befriending Helps Parents?

One parent who previously benefitted from having a Peer Befriender said…  “My Peer befriender has been an absolute lifeline. Since the diagnosis I have felt very cut off and not wanted to socialise or see anybody. It’s so helpful to…

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Training For Educators With Batten Behaviour, Adults And Transitions Specialist Sarah Kenrick

We are pleased to be offering three (free) training slots with Sarah Kenrick, this is for professionals working with children/young people and adults with CLN3. These training slots will be held over Zoom. If you feel this would be beneficial…

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BDFA Kids T-shirt’s In The Shop Now!

Check out the new BDFA kid’s t-shirts. Available in our BDFA colour options of blue and orange. T-shirts have the option to be personalised (extra charge for personalisation) Grab one in time for Batten disease Awareness day on June 9th…

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Update- PEER BEFRIENDING TRAINING NOW ON TUESDAYS!

We have adapted the day of Peer Befriending training to Tuesdays to suit parent availability. We have a few spaces left and would love to hear from you if you would like to become a Peer Befriender for the BDFA.…

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