Our co-founder Lina Eliasson co-authored a recently published paper highlighting the need for emotional and practical support for families caring for a child with Neuronal Ceroid Lipofuscinosis Type 2 Disease (CLN2), a rare degenerative neurometabolic condition that affects children. Onset is usually between the age of two and four, with children rapidly losing language and motor abilities, and having seizures. Life expectancy ranges from six years to the early teens. It’s an incredibly challenging condition for families to live with, affecting everything from family members’ relationships with each other, to their mood and sleep.
‘I was one of the researchers visiting families in their homes to gain insights into their lives,’ says Lina. ‘The experience touched all of us involved in the study deeply, and we are incredibly grateful to the families who participated.’ Many thanks to the Batten Disease Family Association, @NCL-Gruppe Deutschland and the sponsor BioMarin Pharmaceutical Inc for making this study possible.