NEWSLETTER DECEMBER 2013
Welcome to the first edition of our Supporters’ Newsletter. We hope to share useful information with patients, carers, fundraisers and everyone involved with or affected by melanoma in the UK. We would also value your ideas, commentsorsuggestions for future newsletters.
Our story Melanoma Focus was formed just over a year ago, bringing together the Melanoma Study Group and the previous charity known as Melanoma Focus.
We aim to serve the needs of those involved with melanoma at three levels:
- Public, patients and carers
- Clinicians and scientists involved in melanoma medicine and research
- Healthcare professionals with an interest in melanoma who need to know more about the disease, such as GPs and nurses.
Our Trustees and advisers include some of the leading international experts in this field. In future newsletters we will introduce them to you. Our professional membership consists of more than 200 UK melanoma clinicians and nurses.
We have had a tremendous first year and want to share with you our achievements andthe impact of your financial supportand also to bring you up to date with the latest melanoma treatment and research news.
Simon Rodwell
CEO
Treatment News
On 9 December 2013 the Scottish Medicines Consortium (SMC) approved Zelboraf (vemurafenib) for use in the Scotland NHS for the first-line treatment of patients with metastatic or unresectable (inoperable) melanoma (BRAF V600 mutation-positive). This is great news for patients in Scotland, who will now have access to the same medicines as patients in the rest of the UK.
The SMC decision is based on BRIM3 study data showing vemurafenib can extend life beyond one year for patients with metastatic melanoma compared to chemotherapy (extending overall survival to 13.6 months vs. 9.7 months).
The data also showed that vemurafenib can halt disease progression for over 5 months compared to chemotherapy (progression-free survival 6.9 months vs. 1.6 months).
For full details of this exciting story:
The Patient Impact Project
Melanoma Focus is sponsoring scientific research in the fight against melanoma. The Patient Impact Project is one such initiative. Our Scientific Committee chose two study groups, in Dundee and Leeds, each focusedon a different aspect of finding improvements that may benefit melanoma sufferers. The projects, funded by Melanoma Focus, will cost up to £100,000 each. This commitment means the charity must raise significant funds through donations and fundraising events.
The University of Dundee’s Medical Research Institute has already developed a simple blood test to give early warning of when melanoma is likely to spread to other parts of the body. The group now wants to improve the effectiveness of the test and greatly increase the number of patients for whom it will work, allowing this simple procedure to be used in clinics. Work began in October 2013 and the project will last for two years.
At The Leeds Institute of Molecular Medicine a group of scientists plan to begin their two-year project in 2014: to study the effects of a diabetes drug, metformin, on people with melanoma. There have been reports that some patients benefit from metformin, while others suffer harmful effects. The group aims to identify any potential benefits for melanoma patients to see if metformin might be a worthwhile future treatment.
To learn more:
Melanoma Focus Booklet
We have produced a bookletMelanoma: What it is and How to Reduce your Riskfor the general public, patients, carers and fundraisers in particular.It covers a wide range of topics including the ‘what/how/where/why’ questions most commonly asked about diagnosis, risk, treatment options and developments as well as details of how your donations are put to use.
To view/download the booklet in PDF or text format go to:
or to receive a copy, please send an s.a.e. (DL size: 220mm x 110mm, normal postage) and, if possible, a contribution towards printing costs.
Making Scientific Research Papers Accessible
Have you ever struggled to read a paper published in a journal such as Nature about, for example, the results of a melanoma trial? These articles are necessarily teeming with scientific and statistical language and assume in-depth clinical knowledge. They are certainly not intended for a general readership – although in some cases the ‘abstract’ near the start of a paper may help.
We think there is a need for some of the more important recent reports to be made understandable for non-medical people who have an interest in melanoma research. Melanoma Focus has begun a new information programme to achieve just that. We are collaborating with Norwich-based scientist, Dr Matt Tomlinson, to produce two versions of papers selected by our Trustees. For each paper we will publish:
A lay version for public consumption
A more technical version for healthcare professionals who are not melanoma specialists but who need to keep up-to-date with developments in this field
These digests will appear shortly on our website and we will announce them, together with a brief summary, in future newsletters.
Fundraising Events For 2014
Melanoma Focus is planning a number of fundraising events during 2014. Their main purpose is to raise money for the Patient Impact Project. This is just a taster of what to expect:
The first May Bank Holiday weekend will see a group of melanoma clinicians/Tour de France rejects tackle a coast-to-coast bike ride. The route will take them from Whitehaven to the Sunderland Coast, via hill and dale and roads thronged with cheering supporters (they hope!).
To sponsor one of the riders, please email
A second cycling event for the late summer is in the very early stages of planning. Involving a larger contingent of fundraisers and sponsors, this event’s proposed route is from London to Paris (please let there be a strong contingent of dermatologists to advise on the inevitable saddle-sores...).
Melanoma Focus ‘adopted’ by Bourn Golf Club
The Ladies Section of the Bourn Golf Club, near Cambridge, has ‘adopted’ Melanoma Focus as one of its chosen charities for 2014. Their first fundraiser for us, held earlier this month, was a huge success. Nearly 100 golfers participated on Charities Day to raise the magnificent sum of £1,720, which will be shared equally between Melanoma Focus and Cancer Research UK.
At the Presentation Ceremony Simon Rodwell gave a speech thanking the Members for their generosity and setting out the charity’s background, the need for the fight against melanoma in the face of the quadrupling of cases since 1975 and explaining how the funds will be used.
Pictured: Melanie Owers, Lady Vice Captain (right), and Sarah Smith, Assistant Professional
Interested In Fundraising?
Please contact us if you are thinking of organising a fundraising event and would like some assistance. We have a range of items for use by fundraisers, including tee shirts, collection boxes, sponsorship forms, balloons and banners. We may also be able to help you with design and printing for the event.
CONTACT US
WEBSITE
ADDRESSQueen Anne House, Gonville Place, Cambridge CB1 1ND
Please let us know if you do not wish to receive this newsletterin future,
or if you know someone who would like to receive it
DONATE
JUSTGIVINGUse the ‘JustGiving’ button on the Melanoma Focus website
CHEQUEPayable to ‘Melanoma Focus’ and sent to the address above
GIFT AIDPlease provide your address so we can Gift Aid your donation andincrease its value at no extra cost to you: for example, a donation of £10 is worth£12.50 to Melanoma Focus
If you have any comments or suggestions for future newsletters, please get in touch – this is your newsletter!
With our very best wishes for Christmas
and a happy and peaceful 2014
Melanoma Focus Newsletter1December 2013