Next up is Gabrielle, mum to amazing Kadiee who has CLN6. Gabrielle shares her powerful words about her daughter to raise awareness today. #battenday2023
''We found the strength from somewhere to keep going and we are very proud of what we have achieved from then until now'' Hi, I’m Gail, proud Mam to our precious sweethearts Louis Nicole and Jessica and together with my…
The BDFA supports families at every stage of the Batten journey, including our bereaved community. This is the beautiful Tia, her mum Tammy and dad Lewis share their thoughts about her. We are sending love to all families who have…
Batten disease effects all members of the family, in our next post on awareness day, Jordan's grandmother Debbie shares her thoughts about him. #battendiseasebattenday2023
'Her world had completely stopped and with that her spark and smile had faded. I was extremely worried. I reached out to the BDFA to ask for help.'' Mum Kirsty tells her story of her daughter Ava Bella's diagnosis of…
One day to go till International Batten disease awareness day tomorrow! This year the BDFA will be sharing stories and quotes from those at the heart of our work, the families. Our community has come together again this year to…
The BDFA are pleased to introduce a wonderful new book by Dr Ineka Whiteman in association with the Batten Disease Support & Research Association Australia. The book called 'Max and Abby' is told through the eyes of big sister Abby,…
All our Peer Befrienders are parents with lived experience of Batten disease. They have an understanding of the challenges you may face and know how isolating it can be feel to live with a Battens diagnosis.They are here and ready…
SAVE THE DATE International Batten Disease Awareness day is Friday June 9th! Help us to raise awareness, use the #, share posts and help us to turn orange for awareness day this year! More details to follow soon! #battenday2023 #battenawareness…
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…