Formerly known as the Myfanwy Townsend Melanoma Research Fund

Many people in West Sussex know of the Sharpthorne Carol Party, which isn’t surprising as this highly popular group is currently celebrating their 93rd anniversary. The choir, who are currently booking private parties this Christmas will be raising funds for St Catherine’s Hospice and the Melanoma Fund. This is their story:

“Ron and Doris Comber, whose family were Comber and Son (builders who still trade in Sharpthorne) organised a party of carol singers each Christmas to collect donations for local good causes, by traveling around the local area on a lorry bed with a piano strapped to the back. I was in the St. Margaret’s Church choir one Sunday morning when Ron Comber came in to ask if anybody would like to sing with their carol party, as several adult members had lost their voices from tonsillitis.

He assured us we would only be singing the well-known carols, so we all agreed to go along. A few weeks before Christmas we all got together and practised at Ron’s home, fine tuning our voices and having lots of fun. This was the start of an annual event that has continued until the present day.

Local hero
One of the early members, Harry Martin, always came with his collecting tin, which he did from 1932-1988. He was a popular and well known local character and was welcomed in the homes we visited and people enjoyed his sense of humour and local stories. He had been the chauffeur at Courtlands and later, petrol pump attendant at Sharpthorne Garage. (I have a photo of him with his tin at Chiddinglye when Earl Limerick gave a speech and presentation on his retirement.)The Reverend Michael and Sheila Allen called Harry ‘The Top Tin Rattler’.

Grand clients
One of Doreen’s first memories was singing at Dalingridge Place, which was very grand. “We all assembled in the hall around a big iron stove and when we were settled, the family magically appeared from the dining room. Lady Margaret Duckworth would lead the family in, and she and her three sons, their wives and guests were all in full evening dress. Lady Margaret always wore black with a lot of jewellery, and her daughters-in-law also wore a lot of jewellery and looked very grand. To us teenagers it was quite an impressive occasion!

Every year we went to the Furze family at Old House, where some of their family were visiting from America for Christmas. After we had sung, Mrs Pam Furze would play the piano and her grandchildren would sing to us, which gave us a break. In those days we sang to seven or eight houses per evening and also sang outside when requested, such as for Mrs Daw at the Vineyard.

Lord and Lady Kindersley at Plawhatch Hall invited us to sing every year and once or twice on the same evening as the Forest Row Band and Lifeboat Choir. So, more than once the band would be leaving as we arrived, which caused quite a bit of amusement and friendly rivalry.

Houses on fire!
The choir also had a few evenings when things didn’t go quite to plan. As they were driving up Horsted Lane from Ravenswood to Kixes there was a lot of black smoke ahead and they arrived at Kixes they found a fire engine and the oast house on fire! When they enquired whether they still wanted the choir to sing, Lady Wilkinson replied in a very calm voice “Do come in, we are having a problem with the oast, but we would still like you to sing.”

The show must go on!
Another memorable evening was held at Wickenden Manor when the choir were due to sing for the Astor family. They were short of transport that evening, so someone offered the use of his builder’s truck. As they descended down the steep drive, Harry Martin who was our driver, shouted “I think the brakes have failed”. Half way down the hill he turned the truck into a pile of brick rubble and the choir were very lucky to get out ,shaken but unharmed. Doreen recalls ‘Although the truck was in bits, we still joined the rest of the group to sing. ‘The show must go on’, as the saying goes.

Hair on fire
At an event in Hoathly Hill to sing for Robert Clarke’s family, there was a power cut and the whole house was thrown in darkness. A box of candles was produced and the choir did its best in the circumstances to see the music sheets. The worst was yet to come! “Suddenly there was a smell of burning hair. The tenor standing behind me was leaning forward to concentrate on his music and the flame of his candle was singeing my hair! The conductor, Tim Denby who lived at Tanyard, realised what was happening, before I did, and beckoned me to move forward, I was blown out, and we continued to sing!”

Unwelcome guests
One of the more unusual carol singing calls, was the night the choir tried to sing at Snegg’s Hill. As the choir drove up to the house it was well lit up on all four floors. They started to sing and it became very apparent they were not welcome, as starting with the ground floor, one by one the lights went out on each floor until the house was in complete darkness.

For a number of years we sang in St. Margaret’s Church as people were arriving for the Midnight Service on Christmas Eve. We also recorded a cassette in the church in October 1995 in memory of Steve Comber. Pearl Knight was the conductor at that time and arranged the recording.

Last call…
Our last venue every Christmas Eve was to Gravetye Manor. The guests came from the dining room to sit in the hall where we stood by the huge Christmas tree to sing to them. Mr Peter Herbert, the owner, then took us to a member’s room where we ate more mince pies and were served drinks. He always gave a speech of appreciation, along with a few of his memories of Carol Party visits over the years.”

The count up
After the last performance on Christmas Eve the tradition was to have the ‘Count-up’. The money collected was tipped from the collecting tins, and the final total was announced. Back in the 1940’s and 50’s we felt pleased to have collected £30-40. Now the average total is in the thousands.”

Taking bookings
Today the choir is still in high demand. Word of mouth has ensured their bookings, which still include private parties are constant. Michele Luck-Jacques continues as conductor and prepares the musical programme for the year, ensuring she has a well-balanced choir.

If you wish to raise money for a local charity cause and experience a truly traditional experience, why not book the choir for a private booking? They are available in the East Grinstead or Forest Row area between the 12th and 22nd December, please email Julia at juliawalker66@aol.com.

 

 

 

 

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Role: Freelance Part-Time Fundraiser
Hours: Part Time (10 hours per week)
Area: Kent/West Sussex

Pay: £15.00 per hour + paid travel time

Overview
The Melanoma fund is a small charity based in East Grinstead. It carries out a number of awareness-raising and educational campaigns as well as continuously raising funds. We are looking for a confident, friendly and passionate fundraiser with excellent communications skills and the enthusiasm to drum up support for a small but highly proactive charity.

Responsibilities
Working closely with our CEO, your remit is to help grow the charity by increasing the contributions of existing individuals and groups by building on established relationships and exploring new fundraising opportunities from various sources.
You’ll need to be able to network as success in this role depends heavily on being able to forge positive relationships with our growing band of supporters. Another area of your role will be to help raise awareness of our work, aims and goals.

As we are a small charity, you would be willing to cover a variety of fundraising methods, including:
• Corporate
• Trust, grants and statutory
• Community
• Major donor
• Legacy

Requirements
You will report into our CEO, working together as a team to help undertake the following activities:
• Using your experience, help create a fundraising strategy to complement and enhance our campaign activities
• Develop systems to motivate existing and inspire new supporters to maximise the funds they raise
• Help develop and coordinate web-based fundraising, online auctions etc.
• Research and target charitable trusts whose criteria match the charity’s aims and activities
• Help develop a strategy for individual and corporate supporter recruitment and development
• Oversee the development of corporate fundraising, including employee giving and matched giving from employers
• Manage and update databases to record donor contact and preference information

Working hours
We are looking for a home based individual to work approx. 10 hours per week. The exact number, however, will be discussed at interview stage and can be altered if necessary. We will happily offer flexible working. You may need to however work extra hours and out of hours, e.g. to attend evening or weekend events and meetings.

Skills
You will need to show:
• Commitment to our charity’s cause and a passion to get involved!
• Self-motivation and ability to work as part of a small team
• Excellent IT skills with a good working knowledge of Word
• Creativity, imagination and an entrepreneurial attitude towards fundraising
• A proactive attitude, drive, and enthusiasm to carry out projects to conclusion
• The ability to influence others using excellent communication skills
• The capability to work under pressure and meet deadlines
• The ability to meet financial targets
• Good organisational and project management skills
• Resilience; particularly when faced with setbacks
• Sensitivity to the needs of volunteers and donors
• A willingness to carry out a range of administrative tasks
• The ability to think outside the box and suggest new routes for the charity

Work experience
A minimum of 5 years of relevant experience working for a charity, through volunteering or working as a fundraising assistant or in a similar role. We will look favourably on any experience gained in marketing, public relations, events, advertising, sales, and finance.

Contact Us
For informal enquiries please email Michelle on michelle@melanoma-fund.co.uk with your CV and a covering letter.

The Melanoma Fund is an equal opportunities employer and is committed to providing a fair and equitable workplace, where everyone is treated equally without discrimination.

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Dear Stakeholders,

The Department of Health and Social Care has asked the National Institute for Health and Care Excellence (NICE) to produce guidance on using Nivolumab for adjuvant treatment of completely resected melanoma with lymph node
involvement or metastatic disease in the NHS in England.

The appraisal committee considered the evidence submitted by the company and the views of non-company consultees and commentators, clinical experts and patient experts. The recommendations were that Nivolumab is not recommended, within its marketing authorisation as monotherapy for the adjuvant treatment of completely resected melanoma in adults with lymph node involvement or metastatic disease.

Bristol-Meyers Squibb (BMS) is obviously disappointed with this decision as it was based on the report from the Evidence Review Group (ERG) which it believes does not reflect current UK clinical practice.  If this draft guidance does not recommend Nivolumab within its marketing authorisation, and this becomes the final guidance without any changes, it will mean that patients in England and Wales with melanoma with involvement of lymph nodes or metastatic disease who have undergone complete resection will not be able to access Nivolumab as adjuvant therapy.

BMS will obviously be responding robustly to the ACD to try to change the guidance. Whilst there remains a huge unmet need across the adjuvant melanoma population, they will remain committed to get this decision overturned by the 2nd ACM, scheduled for the 16th October.

Unmet patient need
The committee has acknowledged that people with fully resected melanoma are still at high risk of disease recurrence and that the potential curative aim of Nivolumab represented a substantial benefit to patients.

The committee raised questions about patients who may not relapse and as such the impact of adjuvant treatment with Nivolumab affecting the subsequent treatments for patients developing disseminated disease.

Clinical evidence
Because the clinical trial of Nivolumab versus Ipilimumab is still ongoing, data for overall survival are not yet available. This means the data are focused on recurrence-free survival.  Recurrence-free survival is important because increasing the length of time before tumours come back could lead to patients living longer and a better quality of life as relapse is associated with advanced disease.

The committee recognised Nivolumab was more effective than Ipilimumab in the clinical trial. However, the comparison with ‘watch and wait’ was conducted through an indirect treatment comparison. The committee noted some differences between the trials the comparison was based on and, so in their view, the results were uncertain.

Here at the Melanoma Fund, we believe that patients deserve to have an option to this stressful ‘watch and wait’ scenario that they will undoubtedly be left with if BMS fails to reverse this decision.  To provide this alternative course of treatment will create hope at a vital time for these stage 3 and 4 patients, and the Melanoma Fund will be making a submission, responding to with its own comments.

The closing date for all comments is 5.00pm on Friday 28 September.  If you able and willing to support this appraisal, simply register or sign in to your NICE account and leave your comments.  Full details of the consultation are online here: https://www.nice.org.uk/guidance/indevelopment/gid-ta10286/consultation/html-content-2.

 

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Have you grown a RIDICULOUSLY big sunflower?  Here is how to enter and our general terms and conditions:

By submitting an entry to this Promotion, entrants agree to be bound by the following terms and conditions:

The Promotion commences at 8.30am on 1st May (“Start Date”) and closes at Noon on 21st September 2018 (“Closing Date”) (being the “competition period”). For the avoidance of doubt, this means that entries must have been received by the Promoter by the close of this period in order to meet the closing date validity requirements.

Once purchased, entries need to be registered before the end of May and results submitted on or before 21st September 2018 (until 12am Midnight).

Entrants must photograph their entry on the Closing Date and email us at info@melanoma-fund.co.uk to log their entry and demonstrate its height or weight.
Winning plants will be judged in the following way. Tall: Measure from earth to the highest tip of the top petal to where the plant naturally reaches the earth. Big: Cut just behind the head and weigh as requested. We will then get our team to pick out and verify the winning entries for both categories.

The top three entrants in each category will be contacted by phone and we will ask further information in order to verify height and weight etc (This can also be done over the phone or by video).

Entries submitted with incomplete information, or found to contain invalid information shall be deemed invalid entries.

Entry is open to residents of the United Kingdom & the Channel Islands aged 3 and over and all entrants, and their guardians, agree to their photographs being published on the promoter’s website and social media pages.

One entry per person.

To enter, entrants must first register by providing us with their contact details.

The winner will be selected by an independent judge/by a panel that includes at least one independent member, to be held on 30th September 2018.

Details of panel members may be obtained by writing to the Promoter. The judge will assess all valid entries.

The entry that it considers in its subjective opinion/that the majority considers in their subjective opinion to be the tallest or largest (head) sunflower shall be deemed the winning entry (the “Winner”) and receive the Prize/s.

The Winner will be notified of the fact that they have won within 5 days of the Closing Date by [email/telephone/twitter and Facebook. They will then be asked to supply details for delivery of their prize.

The Promoter will use reasonable endeavours to contact the Winner. If a Winner does not respond within 3 calendar months of the first notification, then that individual forfeits the right to claim the Prize.

The Promoter reserves the right to cancel, amend, terminate or temporarily suspend this competition at any time with no liability to any entrant or any third party.

The following prizes are available to be won by 6 winners: A DUAL BURNER GAS BBQ FROM LANDMANN AND A YEAR’S SUPPLY OF ALTRUIST SUNSCREEN FOR ALL THE FAMILY.

No alternative prizes are available, with the exception that in the event of circumstances outside of its control.

The Promoter and its associated agencies and companies accept no liability for any loss, expense or damage which is suffered or sustained (whether or not arising from any person’s negligence) in connection with the Promotion and/or prizes, other than such liability that cannot be excluded by law including death or personal injury caused by negligence, where liability shall be limited to the minimum permissible by law.

Entrants under the age of 16 must seek the permission of their parent/guardian before entering this Promotion.

If there are reasonable grounds to believe that there has been a breach of these Terms and Conditions by an entrant, The Promoter may, at its sole discretion invalidate the relevant entry and disqualify the entrant from the Promotion, irrespective of the stage in the Promotion reached.

The Promoter’s decision in all matters relating to the Promotion is final and binding and no correspondence will be entered into.
The Winners agree to take part for free in any publicity for the Promotion as requested by the Promoter.

The name of the Winners will be available upon request after the Closing Date in writing to the Promoter.

This Promotion is subject to English Law and the exclusive jurisdiction of the English courts. 20 The Promoter is the Melanoma Fund, 6 Manor Road, East Grinstead, West Sussex, H19 1LR

Entrants hereby release Facebook and Twitter of all liability that can be excluded under English law.

This Promotion is in no way sponsored, endorsed or administered by, or associated with, Facebook or Twitter.

HELP!

If you require help with your entry please email michelle@melanoma-fund.co.uk.

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Here at The Melanoma Fund, our core mission is to raise awareness of melanoma, how to prevent it, recognise the diagnostic signs and educate on the importance of early detection.  To achieve this, in 2018 we organised Skin Health Clinics in the South East, working with the melanoma and skin cancer team at Queen Victoria Hospital and skin health experts at rtwskin in Tunbridge Wells.

Our final event this year was held at the beautiful Chartham Park Golf & Country Club in East Grinstead on the 13th August to thank the staff and their members for making us their club charity of 2018/19.

hosted by melanoma fund skin cancer charity
The event was gratefully sponsored by the Rotary Club of East Grinstead who are themselves a wonderful local charity, supporting local community events and causes. As well as opening up appointments to club members, we invited their friends and family and also the local people to pre-book private appointments.

The event format provided either a ten-minute skin check with one of our team of three melanoma surgeons who offered advice and spot checks for melanoma and other forms of skin cancer or a slot with a master pharmacist, who provided advice on sun protection and UV related skin damage.

Appointments were taken by 78 people with referral rates to GPs averaging at 25%, which proved how important this service is. Not only did we help detect skin problems early, we offered advice, aiming to make people think more carefully about the health of their skin and how to avoid problems.

Harry Townsend, the founder of the Melanoma Fund said “We could not have wished for a better outcome. Throughout the afternoon we had lots of one-to-one conversations with those who wanted to know more about melanoma and skin cancer, sun protection and what our charity does in the local community and beyond. In addition, we raised £350.00 from donations received from sales of Altruist SPF30 sunscreen.”

We would like to thank Chartham Park for hosting the day, our generous sponsors for making it possible, our team of medics who worked tirelessly and all those who attended this vital event.

For further information on the Melanoma Fund, to get involved in what we do or to help support our work visit www.melanoma-fund.co.uk.

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This week, the Melanoma Fund attended a Westminster Health Forum Keynote Seminar: Next steps for improving cancer care in England, at The Caledonia Club in South London. The event attracted a full house of delegates including oncologists, clinicians, scientists, pharmaceuticals, government bodies, universities, charities and patient groups.

Leading the way

The seminar was Chaired by Karen Lee MP, Vice-Chair, All-Party Parliamentary Group on Breast Cancer and Lord Saatchi, Chairman, Centre for Policy Studies and offered a number of highly influential and diverse speakers including; Professor Chris Harrison, National Clinical Director, Cancer, NHS England, Dr Rachael Liebmann, Vice-President, Communications, Royal College of Pathologists and Deputy Medical Director, Queen Victoria Hospital NHS Foundation Trust, Emma Greenwood, Director of Policy and Public Affairs, Cancer Research UK and Professor Mark Caulfield, Chief Scientist, Genomics England

Diane Cannon, Melanoma UK, Emma Greenwood, Cancer Research UK and Michelle Baker, Melanoma Fund

The focus

The event focused around the next steps for cancer care in England; looking at funding and access, workforce targets and progress on service redesign. This follows the following recent announcements:
• The former Secretary of State for Health and Social Care announcing an independent review into breast cancer screening
• The new Cancer Drugs Fund, which is expected to release at least £140 million into the NHS over the next five years
• Prime Minister’s commitment to use AI to diagnose at least 50,000 more people at an earlier stage within 15 years;
• Publication of Health Education England’s Cancer Workforce Plan, which makes plans for 200 additional clinical endoscopists and 300 reporting radiographers by 2021.

Michelle Baker, Lord Saatchi, Chair and Diane Cannon

Key discussion points included:
• Collaboration – findings from the 16 regional Cancer Alliances, their impact so far on the redesign of local cancer services, and further opportunities for collaboration;
• Early diagnosis – looking at the progress of the 28-day standard pilots and Rapid Diagnostic and Assessment Centres;
• The Cancer Drugs Fund – progress, value for money and priorities for improving patient care and access to cancer medicines;
• Prevention – public awareness, screening and patient data;
• Patient engagement – including key issues for survivorship, reducing variation and the potential impact of the quality of life metric;
• Research – looking at priorities, collaboration, funding and the impact of Brexit;
• Genomics and personalised medicine – its developing role in improving diagnosis; and
• Workforce – challenges for meeting workforce targets set out in the Cancer Workforce Plan.

Michelle Baker, Prof Mark Caulfield and Diane Cannon

Keeping informed

As a charity it is vital for us to constantly strive to generate a wider understanding of the current climate around cancer treatment and care in the UK. Understanding how trials work or don’t, the implications of screening, how Brexit will affect all of this, how the NHS is looking to improve and survive and how technology is changing the landscape.

Michelle Baker, CEO of the Melanoma Fund and Diane Cannon from Melanoma UK joined forces and approached a number of the Speakers and Chair’s from the meeting, providing some relevant insight what each respective charity does and how melanoma should be made more of a focus. Hopefully our attendance and intervention will provide some food for thought for the powers that be.

Michelle Baker, Prof Chris Harrison, National Clinical Director, Cancer, NHS England and Diane Cannon.

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