Dear Families, At 4pm CST (10pm GMT) on 15th November 2023, Beyond Batten Disease Foundation held their quarterly Family Research Call. This was led by Mary Beth Kiser (CEO), Dr Ineka Whiteman (Scientific Consultant) and Craig Benson (Chair of the…
The BDFA has been asked to share some exciting news from Neurogene. If you would like to read more you can find more information at the link below the letter. Please do not hesitate to reach out to us if…
Dear Families, It is with sadness that we are writing to announce that our dedicated colleague Sian Fisher left her role as the Head of family support at the BDFA. Sian’s last day was on Friday last week. We are…
On the evening on Wednesday 26th April, Dr Joanna Nightingale, Head of Scientific Affairs attended a roundtable meeting hosted by MAP Patient Access Limited on “Harnessing the potential of advanced therapy medicinal products (ATMPs) – the case for change” at…
Launching later this week the BDFA will have special Easter hunt buckets available to buy from our online shop, filled to the brim with delicious chocolates, including some specially wrapped in BDFA colours and our logo. Our wonderful supporters, Beefy's…
We are pleased to announce the appointment of Sarah Chandler to the role of Fundraising Assistant at the BDFA. Sarah lives in Manchester and she will be working full-time at the BDFA to assist with various aspects of the fundraising…
Rare Disease Day is the global movement dedicated to raising awareness and generating change for the 300 million people living with a rare disease worldwide like Batten Disease Since 2008, the global rare disease community has come together on Rare…
Thursday 23rd March. 8pm The Dads Chat group is a chance to meet with other dads of children with Batten disease. It’s led by one of our trained parent Peer Befrienders Andrew Dawkins and James Yarrow (both amazing Batten parents)…
The BDFA is very privileged to be one of four charities supported by Beefy’s Charity Foundation, Lord Ian Botham’s family-led foundation. We are delighted to be working with Beefy’s , also the three other supported charities, Yorkshire Brain Tumour Charity,…
BDFA Family Conference 2023 NewsFamily Tickets available now! The BDFA are excited to be holding our Family conference again in October 2023. We have made some changes to the plan for this year, which we hope, will make the weekend…
