This campaign has now closed
Juvenile Batten Disease (JBD) is a rare, life limiting disease. We have world leading expertise in caring for these young people with 16 beds at our unique nursing home. Around 60 people in the UK have this diagnosis. We want to reach out to these families to give the best possible outreach service.
Categories
Beneficiaries
Situation
Individuals with JBD have to cope with this rare, life limiting disease for years after diagnosis. Although healthy at birth, from 5-8 years old problems with vision start, then seizures & mobility & speech fall away before an early death. They will experience numerous hospital appointments, often with professionals who have never encountered the disease before and so are not aware of the most effective treatments or equipment to support the individual. The strain on the whole family is immense
Solution
Our Outreach Liaison Nurse will support families with advice, training & sign posting. The outreach clinic, held 4 times a year at our specialist centre, will co-ordinate a team of skilled clinicians & professionals who understand JBD. Results will be: b