BDFA - Batten Disease Family Association
The BFDA has been the difference at times from feeling completely alone to knowing that someone else is there that understands. In the hours after our son's diagnosis especially, they filled our huge numb void with a lifeline of support and gave us some hope".
Simon Sewart, dad to Max, 9, who has late infantile Batten disease
The Batten Disease Family Association (BDFA) is a family centred organisation, set up 22 years ago by parents of children with Batten disease. Its mission is to ensure no family who has a child with Batten disease goes through the journey alone, to raise awareness and raise money for research into potential treatments. We aim to maximise the quality of life of children and young people with Batten disease.
Batten disease is a terminal, neurodegenerative condition that causes profound disability in children. It is a fast progressing condition and children lose their ability to walk, talk, see and swallow as well as developing severe and complex epilepsy. It is a truly devastating diagnosis.
The BDFA provides emotional and practical support, delivered through our team of two support workers who cover the UK. We also work in partnership with Great Ormond Street (GOSH) to provide a Clinical Nurse Specialist for Batten disease.
How does the BDFA work directly with families?
We support health
We look after families holistically, supporting the wellbeing of the whole family. We enable families to become experts in their child's condition, supporting them at the time of diagnosis and beyond with home visits, information and advice. We influence and lobby government to enable access to treatments and we successfully achieved NHS funding for Brineura©, the first treatment for Batten disease, in 2018. We have restarted our ‘research’ function and we are currently raising money for a compassionate use trial of Brineura© in the eyes. Brineura© stops the progression of the disease in children with CLN2 Batten disease but does not currently save vision. We hope to raise money for research into other types of Batten disease.
We support wealth
We support families to access the benefits they are entitled to, we signpost families to other funding sources and we run a family grant scheme, never more important than through the Covid-19 pandemic.
We support integration in community and the wider rare disease community
We support families to become less isolated and maximise their child’s quality of life by supporting them to access the best education and leisure opportunities and upskilling the different education and therapy professionals looking after them. We bring the Batten community together, with weekly Zoom meetings, webinars and opportunities for different parts of the community to connect (there is a newly launched, parent led dad’s virtual group, for example). We run an annual conference, delayed due to Covid, but we hope this will run again in October 2021.
Our families made a video https://www.youtube.com/watch?v=7pyObsTERWs&feature=youtu.be
