Want to do more?

Kiss for GISTThe support shown has been staggering. Incredibly people keep asking what more can they do?

Well at the moment our primary objective is still getting signatures on the petition. So anything you can do via Facebook, Twitter or any other form of social media to spread the word would be amazing. Tell your work colleagues, people down the pub, customers, any time you mention the petition is another potential signature. If every signatory got ten more people to sign we would achieve the magic target of 100,000.

Twitter is brilliant but ephemeral, tweets come and go, so the more the better, using retweets and favouriting tweets helps spread the word too! You can follow Jemma here.

With Facebook it is about interacting with posts. BN:Coded have posted a few images to help spread the campaign on Facebook. Sharing, liking and commenting on these will help maintain them in people’s news feeds. This organically grows the reach of a single post among your friends, their friends and then further, there is also no harm in sharing things twice or creating your own post in your own words.

Still want to do more? Well, GIST Support UK  have created this MP Letter Template that you can use to write to your local MP and ask for their support in re-instating Regorafenib to the Cancer Drugs Fund list for GIST patients. We thank GIST Support UK for their efforts.

There is also the fund raising page, http://www.gofundme.com/ma2i0w, if you feel like you could spare some funds for this very worthy cause. Money raised will be put aside to help towards funding Jemma’s medication if we are unable to get it back onto the NHS. If we are successful through the petition then the funds raised will be donated to GIST Support UK to help all sufferers.

Do you know anyone in the media? Direct them to our press release, any coverage would be most welcome!

We have had great success getting Jemma in the local press (see them here), if you visit the websites and comment and interact on the articles they keep them current on the websites – this is really beneficial too.

Thank you for all that you have done and for wanting to help.

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Hitting the Right Note

Kiss for GISTWe’re truly overwhelmed by all the support over the last few days. Social media has had a massive impact on the petition and grown the count by hundreds of signatures each day. Many people have been pushing Jemma’s plight on Twitter and it’s always fantastic when a famous person takes the time to promote amazing causes via their own fan base. The music industry have been stepping up to centre stage and performing well by spreading the campaign.

Headlining the list of musicians is Angie Brown, featured vocalist on Bizarre Inc’s track ‘I’m Gonna Get You’, who tweeted “Bless you Jemma x” and reinforced her support by following @PeacockJemma on twitter. Also following Jemma is Jamaican R&B and soul singer Ruby Turner and American band Arrested Development. It’s got to be perfect when Fairground Attraction’s Eddi Reader shows her support along with the writer of Atomic Kitten’s ‘Whole Again’ and OMD drummer Stuart Kershaw, Shelly Poole from Alisha’s Attic, The Lotus Eaters and folk legend Eliza Carthy MBE.

With their help and the help of so many others we have reached over 6000 signatures, but we still need so many more. Please take the time to join the crowd and sign the petition to try and reinstate the life giving cancer drug Regorafenib (Stivarga®).

The support from the music world saw one follower, @AndyDekka, tweet: “Just noticed @peacockjemma has nearly enough musicians following & supporting her for an episode of Top Of The Pops! #Regorafenib”

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Mini Milestone

So much has happened in such a short space of time, BBC South Today, a Facebook and Twitter campaign and a new website. Today, after just a few days we are halfway to reaching our initial target. We would so love to get to 10,000 signatures on the all important petition and then march on from there.

We have also posted a press release and would be grateful if anyone has any contacts to make them aware of that!

Thank you for all your support and please continue to help spread the word however you can for Jemma and other GIST sufferers.

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Support from the World of Sport

Football, cricket, rugby, in fact all sports have one thing in common – fans.

These fans are often referred to as supporters and that is exactly what the campaign for GIST cancer sufferers urgently needs, support. So it’s great to see sports personalities and fans back the campaign and spread the world for the petition to reinstate Regorafenib on the Cancer Drugs Fund list.

So far Carlton Palmer, has tweeted his support. The ex-premier league footballer and England International does a lot for charity and is hoping to raise £1m for Cavendish Cancer Care this year. Ex-cricketer David ‘Bumble’ Lloyd, the Sky Sports commentator has also tweeted his support.

The Brighton and Hove Albion fans are also doing there bit by posting on the North Stand Chat forum (see below). Everyone’s support is much appreciated.

 

NorthStandChat

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Professor Ian Judson’s Opinion

In response to regorafenib’s removal Professor Ian Judson, Head of the Sarcoma Unit at The Royal Marsden Hospital and Chair of the GIST Support UK Medical Advisory Board, stated: “The Cancer Drugs Fund was initially set up to give access to drugs deemed not to be cost effective by NICE, which has not appraised regorafenib for cost-effectiveness in this setting. The CDF press release says that they will not remove drugs from the list that are the only drug available for a given disease. However, regorafenib is the only treatment for GIST that is resistant to imatinib and sunitinib.”

Source: GIST Support UK Press Release 16-01-2015

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