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.
Philippa and Thomas Ward have been featured in The York Press, BBC Radio Sheffield , BBC Radio York and Channel 5 News.
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.
Jess Holt and daughter Darcy made the Wakefield Express and sister paper the Hemsworth and South Elmsall Express.
And Bobbie Tyler and daughter Jennifer made the Oxford Mail and BBC South Today News on 26 November.
If you are keen to help
and happy to speak to a local journalist, then please get in touch with sarah.roberts@tuberous-sclerosis.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.
Please click here for our advice if you are currently taking everolimus as part of a clinical trial.
