This is a message to say a huge thank you to everyone in our TS community who has responded so readily to our recent call for information about Everolimus and Epilepsy.
Since we posted our urgent request for help on our website, our Facebook page, Twitter feed and via our community e-newsletter we have heard from 15 people with TSC and their families, which is an incredible response given how few people have had an opportunity to try everolimus, a short timescale for response, and how busy everybody is.
We’ve listened to you all and included as much of your invaluable insights and feedback in our report to the National Institute of Clinical Excellence which we have submitted today (Friday, July 14, 2017).
It is our understanding that NHS England will be making a decision on Everolimus for refractory epilepsy in TSC in December 2017.
So please keep an eye on this website, our Facebook page, Twitter feed, e-newsletters and Scan magazine as we will be updating you all on our next steps regarding this campaign over the next few weeks.
And thank you all for your tremendous support, wisdom and courage – as ever.