CLLSA NEWSLETTER Autumn 2017

TRUSTEES REPORT

Raising the profile of CLL and Blood Cancer 

We were delighted to be able to join forces with the other patient support charities in the blood cancer field to work with the pharmaceutical com-pany Janssen in their “Make Blood Cancer Visible” project. This was part of Blood Cancer Awareness Month during September. 

The idea was to demonstrate to the public that blood cancer deserves more attention than it currently receives. The designer came up with the concept that 104 persons are diagnosed with blood cancer every day in the UK. 

To bring this to life each of the charities were asked to find a number of patients who would be prepared to have their name erected as plinth together with a plaque telling their story. Each plinth was then executed to show the exact height of the patient concerned. 

We were allocated 14 plinths for the installation in Paternoster Square, behind St Paul’s Cathedral in London. The overall impression of the project was very positive. There were moving accounts of the personal impact of CLL: the shock of diagnosis; the difficulty of coping with the unpredict-ability of the disease. Yet patients’ words displayed a remarkable resili-ence and resourcefulness for making the most of life. 

Thanks to the help of Public Relations adviser, Liz Adams, we were able to make very good use of this exposure in social media and in traditional  Media. 

We believe that we have succeeded in giving a boost to the awareness of CLL, but our work continues! 

Venetoclax 

We were pleased to see that NICE have decided to pass this new drug to the Cancer Drugs Fund. It will be made available to relapsed patients, who have had prior treatment and have had treatment with ibrutinib or idelalisib. 

Surveys 

We have recently sent out a survey to you all. We are hoping to give our members more opportunity to meet with others affected by CLL and wanted to find out the level of interest in setting up more local support groups. As a small charity, with only part-time coordinator, Sarah Tobin, we operate largely through our volunteers, trustees included. 

Our survey suggested ways in which members might help the Association: we invited expressions of interest in volunteering. We were also keen to learn your views on a possible  membership fee and conference contribution, so that any decision trustees make will be informed by members’ views. We have received 368 returns, that’s 20% of our membership. So that’s good! We shall of course let you have the results of the survey as soon as they are to hand. 

In the meantime you can read the findings of our pilot survey at our conferences in this newsletter. 

Another recent CLLSA survey looked at the psychological impact of a CLL diagnosis. Key findings and the media coverage we have secured are included in this newsletter. 

David Innes 

CLLSA Chair 

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