General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
2019-01-30 16.03.06

Our Mission

Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a cure.

Our Plans

a. Employ a full-time support and advocacy worker
b. Operate a Freephone helpline
c. Commission the first Batten disease Clinical Nurse Specialist in the UK
d. Operate a small grant scheme to help meet the needs of caring for a child or young person living with Batten disease.
e. Increase our research funding in the UK and worldwide into potential therapies and ultimately a cure.

Latest News

Gail’s Story

Gail’s story

“Jessica is living proof that early diagnosis and treatment can change the course of this dreadful disease” Sisters, Nicole and Jessica both have CLN2, and their mother, Gail Rich explains…

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Hannah’s Story

Hannah’s Story

“Hannah was happier than any of us… and whether or not she was upset or scared, she never let it show. She was a really strong girl” Liv Batterbee, speaks…

read more
Imperfect

Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

 

All donations help us to provide the best support we can to families affected by Batten Disease.

 

Thank you for your support.