From desperate times to a feeling of optimism in several weeks, literally one extreme to another.
This website launched on St Valentine’s Day, after a friend appealed for help on Facebook. A stranger, who I am still yet to meet, volunteered the services of his company, BN:Coded, and his own personal time to build this website. It was to be my online home, a hub for all things to do with my plight and most importantly a place to direct social media so that people can find out more.
Through it, I have met other GISTers, like Sam Waller, I have been able to push the #100000voices campaign and I have had a place to direct the media when sending out press releases. I have been able to say thank you to some of the amazing friends and strangers that have helped. With the campaign gathering momentum I have not been able to do as much acknowledging as I would have liked, but you all know who you are and if you have signed and shared the petition you have all played and important role.
As I’ve said before this is a rare cancer, so for comparatively few to gain the support of so many is humbling. We are only half way, so we need to do the same again before the end of the month. The momentum might be tough to continue but I am determined to get Regorafenib reinstated as an option for GIST sufferers. We ‘GISTers’ cannot do it without your help, so keep spreading the campaign as far and wide as you can and as often as you can.
We must focus on the positive and that is we’ve now had over 50,000 signatures on the petition – in a word: BOOOM!