We regret to inform you that the outreach service, funded for 1 year, ended at the end of March 2021.

Sarah Kenrick, who held the post of Outreach Liaison Nurse – juvenile CLN3 (Batten) disease has taken an advisory role (voluntary) with the Batten Disease Family Association (BDFA).

Sarah remains committed to supporting children and adults affected by Batten, their families and associated professionals.

If you do require support from Sarah, please contact the BDFA Family Support Officers Wendy Thompson or Cathy McSweeney at [email protected] and they will liaise with Sarah.

Free resources

We have written some guidance for families, carers and associated professionals. You can download these below and if you have any more questions, please feel free to contact Jacqui Bradley at [email protected].

Physiotherapy for children and adults living with juvenile CLN3 (Batten) disease

Medicines and supportive strategies for the management of epilepsy in the mid and later stages of juvenile CLN3 (Batten) disease

Supporting anxiety, panic attacks, hallucinations and night terrors in juvenile CLN3 (Batten) disease

Supportive positioning for people with juvenile CLN3 (Batten) disease