A sincere thank you to everyone who has been in touch with us since Saturday, July 7, when news broke of NHS England’s decision not to fund everolimus for uncontrolled epilepsy in TSC. We appreciate this is very disappointing and frightening news and greatly value your commitment to supporting our plans to challenge and overturn this decision.
Thanks to the support of many of our community members we are already generating headlines in local newspapers about NHS England’s decision.
David Wright and son Miles have made the headlines in The Hull Daily Mail.
Phil, Linda and son Stephen Gavin made the front page of Wigan Today.
David Martins-Hesp and son Leo made the headlines in page in The Comet, and David was also interviewed on BBC 3 Counties Radio.
Jo Parrott and son Rhys made the front page of The Scarborough News.
Lottie Norton and son Freddie were featured in the BBC South East TV news bulletin on 24 July.
If you are keen to help and happy to speak to a local journalist, then please get in touch with firstname.lastname@example.org. We can offer support and make sure there is a quote from the TSA and our fantastic clinical adviser Dr Chris Kingswood in the article.
We are also putting together our #everolimusforepilepsy #nhsenglandwrongdecision #wewontgiveup campaign which we will be launching on Monday, August 13 and which intend to take to Parliament.
So please watch this space and encourage
as many of your friends, family, colleagues and neighbours to join us in our
fight. Together we are stronger and we can – and will – succeed.