Help Fund the ONLY Treatment for Children with FATAL Batten Disease

Reasons for signing

See why other supporters are signing, why this petition is important to them, and share your reason for signing (this will mean a lot to the starter of the petition).

Thanks for adding your voice.

David Hodgkinson
Oct 28, 2020
We Are Born Equal, & Should Be Treated As Such,

Thanks for adding your voice.

Rebecca Ellse
Aug 24, 2020
I don't want to share details but I have partly seen and heard what happens through this awful.disease within my family. To think this treatment can ease or stabilise it and offer a better quality of life seems like a no brainer to me. I have my own problems with NICE and overly they come.across as incompetent. I don't know if this change has happened or not as most comments on this are from 3 years ago and not with COVID 19 so prevalent but am.signing to taise awareness and hoping the treatment becomes available for all cc

Thanks for adding your voice.

Jennie Blackburn
May 25, 2020
I have taught 3 children who have had this horrible disease. Heartbreaking!

Thanks for adding your voice.

Maureen Smith
Mar 18, 2020
I think NICE should reconsider and allow this treatment. Short term investment for long term gain!

Thanks for adding your voice.

Irena Deacon
Mar 17, 2020
Everybody deserves health treatment equally and the children in need must be helped! This is a first world country. This should not be happening.

Thanks for adding your voice.

Joan Law
Mar 17, 2020
I'm signing because NICE only looks at the efficacy of a drug. But is uninterested in the benefits shown to the young patients.

Thanks for adding your voice.

melanie james
1 year ago
Every child should be entitled to their very best chance in life and no parent should have to worry financially as well as emotionally under such devastating circumstances. God bless all who go through this heartache

Thanks for adding your voice.

Kelly Carlisle
1 year ago
All of these children deserve the chance of a less traumatic illness, as do the parents and family of the child at such a horrendous time.

Thanks for adding your voice.

Shaied Yasin
1 year ago
This is sad. Our charities are underfunded

Thanks for adding your voice.

Jacqueline Cheetham
1 year ago
I have nursed children with this terrible disease, more research and genetical education sharing is needed to help people understand and eradicate this horrible disease