Campaign to get Brineura approved by NICE

A reminder that the CLN2 Community and The Batten Disease Family Association will be gathering outside the Houses of Parliament on Wednesday, 12th March, at 1 pm to raise awareness of our campaign to ensure that Brineura is approved by NICE.

Children with CLN2 Batten Disease develop uncontrollable seizures, loss of mobility, vision and speech loss. Their quality of life would be very poor without this treatment, and their life expectancy is between 6 - 12 years 💔

Life for children on Brineura (enzyme replacement therapy) is very different, with seizure control, significant slowing of disease progression, and giving them an extended and better quality of life.

The Batten community invites as many people as possible to join them at the Houses of Parliament. "We have to make a stand; we need to be seen, and we need to be heard."

"Join us as we fight for the right for every child with CLN2 to receive this life-saving treatment now and in the future."

If you are unable to travel to London for this event. Amelia and Ollie ask you to help by wearing ORANGE and remember to take a picture and post it to your social media pages. With the caption: “We need a yes. Brineura for Battens." 

Make sure you tag @ameliasarmy (Instagram) @Batten Disease Family Association NICE - National Institute for Health and Care Excellence and NHS England