Fighting for Their Lives
This video has been put together by the families of children affected by CLN2. They have come together to take a stand on the injustice they are facing trying to secure treatment for their precious children. The negotiations are relentless and stressful and children with CLN2 Batten disease deteriorate rapidly They are united in their fight. We are united in their fight with them. We will all never stop fighting.PLEASE SHARE WIDELY USING THE HASHTAG #fightingfortheirlivesPosted by Batten Disease Family Association on Thursday, 4 July 2019
ITV Tyne Tees feature: Point of View
A family's fight for life-prolonging treatment for Batten disease to be provided on the NHS
A family say they fear their two daughters and other children like them now face the threat of "rapid, traumatic, decline", after NHS funding was refused, for a life-prolonging enzyme replacement treatment. Nicole and Jessica Rich from Throckley near Newcastle have Batten Disease - a rare genetic disorder with no known cure. Their parents say they're disappointed about the decision as they see the benefits of the treatment, first hand.Posted by ITV Tyne Tees on Monday, 25 February 2019
We were delighted to meet The Secretary of State for Health and Social Care, Matt Hancock, on a visit to Westminster thanks to our fantastic Newcastle North MP, Catherine McKinnell.
Catherine has worked tirelessly on her Batten Disease campaign for some time now and we are so thankful for everything she has done for us and the other families who are in the same situation.
BBC Inside Out feature: NICE decision
The Sunday Mirror feature: NICE Decision