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Welcome to our Winter 2020 Newsletter

Regardless of the coronavirus pandemic, 2020 has been a busy year for KCSN members: We have launched our exciting new video project on our website and YouTube, made numerous applications to NICE and the Scottish Medicines Consortium (SMC), taken part in a virtual World Kidney Cancer Day, and a virtual International Kidney Cancer Coalition (IKCC) conference. Although, as you can expect, fundraising activities have declined considerably.
 
We hope you enjoy hearing about the work we do to support our community! If you have any suggestions for our newsletter, we would love to hear from you, so please get in touch


KCSN Virtual Christmas Cards

This year we have arranged for you to be able to send digital Christmas cards to friends and family through the Virgin Money Giving platform and use the money saved on cards and stamps to help us. You can donate as much or as little as you want to KCSN using the 'Virtual Christmas Card Campaign'. Search for Kidney Cancer Support Network to make your donation. The funds raised will be used to reinforce our patient support services and help keep them going throughout the coronavirus pandemic. 

You can choose from six designs, two of which are shown above, add your message, and then share the goodwill with everyone you know on Facebook, Twitter or WhatsApp.

We appreciate the help of our community and want to continue to provide support to an extensive network of kidney cancer patients, carers and families across the UK. 


Help us to help you!


This year has been a difficult time for fundraisers due to the coronavirus pandemic. Many events have been cancelled or postponed, and people have not been able to get out and about.

Virtual fundraising is a fun way to donate; if you would like more information about how to organise or be involved in a virtual KCSN fundraising event, please get in touch with us. Here are some virtual ways you can help support us:

  • Virtual Christmas cards (see section above)
  • Fundraise while doing your Christmas shopping online using platforms such as Amazon Smile, easyfundraising, Virgin Giving, the Facebook Donate button and eBay
  • Nominate our charity through Ecclesiastical Giving for the chance to win KCSN £1000 (see below)
  • Virtual fundraising events
  • Making a special one-off or a regular donation to help us fund a particular project.
All help in one way or another. Visit the Support Us page on our website for a list of easy ways to donate.

There are lots of other ways you can get involved to help raise the profile of kidney cancer. Building awareness of this devastating disease puts kidney cancer in the minds of NHS policy makers and the general public, and may ultimately help save lives. There is a lot of information about how to get involved and make a real difference on our website. You can help us to help others by volunteering, joining the KCSN support groups on Facebook, writing your kidney cancer story or a help sheet, or becoming a patient advocate for KCSN.

Ecclesiastical Giving

We are applying for a grant from Ecclesiastical Giving, which will help with our charity outreach project. You can nominate for your chosen charity on the Ecclesiastical Giving website. The more nominations a charity receives the greater the chance of winning. Only one nomination per person. Nominations close on Tuesday 22 December. You will need our charity name: Kidney Cancer Support Network and/or our charity number: 1164238.


A very big THANK YOU!

This year has been a difficult time for fundraisers, although we have had a few virtual fundraising activities taking place. The London Marathon was replaced by the 2.6 Challenge, there were some virtual challenges, such as Jack and Phil's triathlon, and many events were postponed until next year. However, we would like to say a very big THANK YOU for the fantastic efforts of our virtual fundraisers who have kept us going throughout the year. We are extremely grateful for all the donations made to KCSN, big or small they all make a difference.

Here are the highlights of some of the virtual events that took place this year. Read more about these exciting fundraising events on our website. Thank you to everyone who organised and took part in these events on behalf of KCSN:






KCSN is registered with the Fundraising Regulator and abides by the Code of Fundraising Practice, which outlines the standards expected of all charitable fundraising organisations across the UK. 

Patients, in our own words


We would like to say a very big THANK YOU to all those who took part in the patient video project; Patients, in our own words. The project provides a valuable resource for all people diagnosed with kidney cancer and their carers. You can find the videos on our YouTube channel and the KCSN website.


Access to new medicines





Although we are in the middle of a pandemic, the health authorities do not stop working. Through the use of virtual media, appraisal meetings for new medicines have continued to take place. KCSN have been heavily involved with these appraisals and have made submissions and attended virtual meetings. The following combinations have recently been approved for use within NHS England, Wales and Scotland or are about go through the appraisal process:

  • NICE avelumab plus axitinib combination – approved for use through the Cancer Drugs Fund for use within NHS England and Wales
  • NICE pembrolizumab plus axitinib combination – declined on appeal
  • SMC avelumab plus axitinib combination – accepted for use within NHS Scotland
  • SMC pembrolizumab plus axitinib combination – accepted for use within NHS Scotland
  • NICE scoping document for lenvatinib plus everolimus/pembrolizumab combination
  • NICE scoping document for adjuvant pembrolizumab for non-metastatic RCC.

Alison Fielding at the IKCC and NCRI



 

Alison Fielding, one of our charity admin team and trustee for KCSN, represented the patient perspective on clinical trials at the virtual International Kidney Cancer Coalition (IKCC) conference and the National Clinical Research Institute (NCRI) webinar. We would like to thank Alison for her excellent advocacy on behalf of the kidney cancer community and bringing the patient voice into the design and management of new clinical trials. 

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Kidney Cancer Support Network · The Bungalow, Westcliff · Porthtowan · Truro, Cornwall TR4 8AE · United Kingdom

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