Waldorf Hilton, London 27th September 2018

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JN386_TRiCE_PRINT_AD_OcuMel_PRINT.indd 1 10/07/2018 09:31 Welcome note

I have pulled in favours from family, Along with another lady who lost her Joanne Morgan, friends and colleagues; some of dad, we created a website to provide Patient and Trustee whom I have known for over 30 information and supported people years and I would also like to thank through a helpline. everyone from the bottom of my We arranged patient conferences heart who has helped bring this and helped patients understand their evening together. options.

Please enjoy what promises to When I think back to what we have be a fantastic event. achieved already, I feel immensely proud, but it is always with sadness, the losses never get easier. Jo Gumbs, The sad reality is that the UK does National Director not have a care coordinator nurse for this condition and so we have developed this role based on the care that is available to patients with more common cancers. This I am Joanne Morgan, mum to disease spreads for half the patients Alannah, Lucy and Daniel, wife to who are diagnosed. Patients need Greg, daughter to Pam and Mike and more support as it’s common for a patient with ocular melanoma. people to experience treatment delays. Employing a nurse to support Being told that I have cancer was the patients will not only provide much- most difficult news for my family and needed guidance, but it will allow us I to come to terms with. It has been to focus on finding a cure for ocular so difficult to understand and accept melanoma. the uncertainty that surrounds rare cancers and my future. We are so grateful to everyone that I will never forget the day we were has helped OcuMel UK reach this Soon after my diagnosis, I came told my dad had a large tumour at the point. The incredible people who across OcuMel UK who have helped back of his eye and that his eye would have brought this evening together me through my journey to date with need to be removed. It wasn’t until and to all of you who are here tonight invaluable emotional and practical two years later that we began to learn supporting our work. support. Without Jo Gumbs and her the enormity of what this dreadful tiny team of staff, my journey would cancer meant. We had assumed A special thank you goes to Joanne have been a very different one. that if the cancer was to spread, he Morgan who has thrown herself into would be offered chemotherapy, or organising this event. It is only through Tonight, I thank you all for coming and some other type of treatment but this her hard work and determination that for digging deep in your hard-earned wasn’t the case. There was no clear this evening has been made possible. pockets. I can assure you that every treatment path and we lost him to this She is an inspiration to us all. penny spent by yourselves and every dreadful disease shortly after. Our pound raised in our auction will go family were devasted, angry, guilty, Thank you again to everyone, I towards supporting the employment lost and every other emotion you wish you all a fantastic night. of a specialist nurse. This vital role could think of, but knew we could not will guide and support us, as patients, let others have the same experience. in the right direction to the medical OcuMel UK was formed. teams and the trials that are available to keep us alive.

3 Order of the Evening

Sparkling wine reception featuring The Pub Landlord Magic from Josh King

Piano Accompaniment by Paul Moran

Welcome by Sally Bundock

Interactive Silent Auction throughout the evening

Starter Salmon Three Ways cured, poached and smoked with a Ponzu dressing and a citrus salad

Soprano performance by Natasha Marsh

Main Corn Fed Chicken Breast with a chicken scotch egg, crushed new potatoes, beetroot puree, garlic and nutmeg with Café Au Lait sauce

Comedy with Tony Brennan

Charity Appeal

50/50 Dessert Flourless Chocolate Cake with vanilla mascarpone cream, warm chocolate sauce and Mocha ice-cream or Vanilla Bean Crème Brulee with raspberry sauce, spun sugar caramel and berry compote

Live Auction with Ian ‘Roycey’ Royce

Music by The Mighty Quinn

Carriages at 1am

4 About OcuMel UK

Our vision is a world where ocular melanoma patients are given the information, support and treatment they need. OcuMel UK is overseen by a fantastic Board of Trustees, the majority of whom are ocular melanoma patients and family members. The Board is always looking for people to join and strengthen our team

• Neil Pearce, Chair & Associate Medical Director • Joanna Dallas, Treasurer and wife of a Patient • Tamara Rimmer, Secretary and Patient • Joanne Morgan, Trustee and Patient • Ben Richardson, Trustee and Optometrist • Gianfranco De Franco, Trustee and Solicitor • Jo Gumbs, Founder, Trustee and daughter of late Patient

We know ocular melanoma can spread to other organs Everything that we have achieved, we have done through for half the people it affects. For these patients there are sheer dedication and passion to make a real treatments that can help, but the time it takes to access change to the lives of those affected by this rare and these treatments can be an issue. dreadful cancer. We also know that despite our efforts, our membership is growing faster than we can Ultimately, we need a cure. Until then we can make a properly manage and there are still many patients we have difference by helping people navigate the system not reached yet. until a breakthough is found. This prompted the need to recruit a dedicated nurse who To think that just 2 years ago our small charity was will continue to provide this crucial support and include a working from a spare bedroom and today we have specialist focus for stage IV patients, end of life care, grown to three employees and have an actual offi ce to counselling and be available at the various hospital at clinic work from! Our small team are more determined times. Our aim is to recruit for this role by November 2018 than ever to change the future for ocular melanoma and have a sustainable fundraising strategy in place. All patients. We are privileged to organise annual patient proceeds from this evenings Gala will be directly allocated conferences, produce bulletins, newsletters, launch and to the recruitment and employment of this role. manage annual campaigns, support all awareness and fundraising activities, organise local fundraising By working with our connections in Europe and the USA, events, manage our accounts and be our own IT we are bringing medical professionals, patients support! and pharmaceutical companies together to develop a strategy for focused research into a cure for this disease. This work cannot come quickly enough and we look forward to the Spring to host these meetings.

5 This Evenings Entertainment

Sally Bundock Al Murray There is rarely a dull moment Al Murray with his alter-ego, covering news, business and The Pub Landlord, is one of the finance at the BBC and Sally has most recognisable and successful been on the job for 20 years! comics in the UK. Presenting ‘The Briefing’ at 5am on BBC1, BBC News Channel For over 20 years Al has filled and BBC World News Monday to arenas around the world, won Thursday, Sally is the face numerous awards and accolades and of the one-hour live programme that briefs the audience on has successfully hosted an array of TV series which the day ahead with an estimated global audience just shy include Al Murray’s Happy Hour and the ground breaking of 100 million viewers around the world. sitcom, Time Gentlemen Please which has become something of a modern day cult classic. In 2014 Sally was named as one of the UK’s top 50 most powerful part-timers on the third annual Power Part Time Al’s other live TV appearances as The Pub Landlord List compiled by both Timewise and the Financial Times. include three appearances on The Royal Variety Performance (ITV1), Stand Up Central (Comedy Central), Sally’s motivation to support us this evening stems from hosting Live at the Apollo (BBC1) and Live at the her first-hand experience of the devastating effects of Palladium (ITV) to name just a few. cancer. Sally has been good friends with Joanne Morgan for many years since their sons started primary school Al continues to sell-out stand-up national and international together. In June 2017, Sally lost her husband of 18 tours, which has made him one of the most popular live wonderful years, Paul, to cancer. Sally lived the “cancer comedy acts in the country. journey” with their 3 beautiful boys whilst Paul bravely fought terminal cancer for 8 years. Sally is happy to support this cause.

Paul Moran Josh King

Paul Moran is a Hammond Josh started learning magic at organist, pianist, trumpeter, a very early age and has now composer and arranger and become a very talented up and has been a ‘first call’ musician coming international magician at for many producers and celebrity age 19. artists since 1989. Entertaining people by performing close Pauls prolific abilities have brought him and up magic at weddings, corporate events, private parties, recording work (UK and worldwide) with an array of artists charity events and has even entertained in Switzerland, as diverse and impressive as: Van Morrison, Natalie Cole, Paris and Amsterdam. Pete Townshend, George Michael, Tony Hadley, The Drifters, Michael Ball, Tom Jones, Chrissie Hynde and Josh has now started working for the French magician, Jools Holland. They are just a few who appreciate Paul for Etienne Pradier of Penn and Teller fame. his sensational skills as a keyboard player, accomplished jazz musician and orchestrator.

Since 2010, Paul has embarked on a solo career, composing over half of the tracks on his debut jazz organ ‘Smokin’ B3’, reaching number 8 in the HMV British jazz charts. This led to famous Hammond Organ icon Jimmy McGriff, describing Paul as the ‘real deal’.

6 _

Tony Brennan Ian Royce (Roycey)

Tony has worked for the Foreign Arguably the UK’s leading warm-up Offi ce for the last 24 years. man, Ian has been with both The During this time, he has been X Factor and Britain’s Got Talent posted to many places worldwide. since the very beginning, working He is now based in London and on all of Simon Cowell’s shows on in his spare time he is a stand-up both sides of the Atlantic. comedian. Ian has been performing stand up for 22 years and has Whilst living in Australia, Tony was diagnosed with ocular over 300 hours of live television presenting to his name melanoma in early 2017, which was the start of a tortuous including ‘The Big Big Talent Show’, ‘Talking Telephone process resulting in the removal of his right eye. Since Numbers’, ‘The Time The Place’, ‘Stand and Deliver’,‘The returning to the UK, Tony has praised the support he has Stand up Show’, ‘The London Debate’ and The Xtra Factor. received from OcuMel UK and we are delighted that he is able to support this event in person this evening. The Mighty Quinn “OcuMel UK were there when I had questions to ask and needed a well informed shoulder to cry on. I am delighted Fronted by Sinead Quinn of BBC’s that this organisation, which is so important for the small . Sinead has number of people whose lives have been changed by this performed with , pernicious disease, will benefi t from tonight’s event. I hope , Lionel Ritchie and it will be the fi rst of many annual fundraisers, and I hope Ronan Keating. This All-Star Band to be at next year’s, and several more after that. If I am, also features Paul Stewart and Ciaran OcuMel’s support will be largely to thank for it.” Jeremiah of , Jack Stevens (Mick Hucknall), Charlie Willcocks (Sam Sparro) and Matt Inspirationally, Tony has not lost his incredible sense of Park (The Noisettes). Collectively these musicians have humour and pulls on his experiences to bring awareness to sold over 2 million records and have performed literally this rare disease in a way that only a patient can. We are 1000’s of shows to literally millions of people. fortunate enough to share Tony’s personal journey with you all through tonight’s stand-up act and hope that you too will appreciate his undeniable strength of character.

Our heartfelt thanks goes out to our lovely host and Natasha Marsh entertainers for giving us their time this evening. In the summer of 2006, Natasha signed a world-wide recording contract with EMI Classics, recording her debut album ‘Amour’ which hit the top of the Classical Charts in its fi rst week of release.

Natasha is now one of the UK’s leading Sopranos, extensively touring the UK and Europe performing live at events such as the Carling Cup fi nal at Wembley Stadium, where she sang the National Anthem. Natasha has also appeared as special guest for artists including Il Divo, Russell Watson and Jose Carreras and she is now fi rmly on the map as a celebrated international recording artist and is a highly respected Soprano within the opera world.

7 Live Auction

Tonight you will have the opportunity to bid on three fantastic live auction prizes, all donated in aid of OcuMel UK.

This is a wonderful chance to support their work and go home this evening with something very special.

1. Gibson Les Paul Special - 11 SLASH edition Guitar

This Gibson Les Paul Special-11 SLASH edition Guitar was signed at the Metal Hammer, Golden Gods Awards on the 13th June 2016 at the Hammersmith Apollo. Signed by artists and musicians from the winners and performers including; Saxon, Sixx AM includes members of Motley Crue and Guns N Roses, Halestorm, Motorhead, Megadeth, Gojira, Slipknot to name a few. Some of the most famous musicians to sign it were Nikki Sixx Motley Crue, Dave Mustaine Megadeth and DJ Ashba Guns N Roses and Phil Campbell Motorhead.

2. One Hour Extreme Flying

In the world’s most extreme aerobatic aircraft the Extremair XA42. Flying out from one of the most beautiful parts of the country, the Cotswolds, you will experience incredible views upside down, left & right and even the right way up!

3. Tickets to Sports Personality of the Year

Enjoy two tickets to Sports Personality of the Year on the 16th of December in . Hosted by Gabby Logan, Gary Linekar & Clare Balding. You will be seated in the front section of the room, maybe next to a top sports star or one of the contenders. If that wasn’t enough, tickets to the VIP afterparty are also included.

8 Silent Auction

We have some fantastic items on offer this evening for our silent auction.

Please refer to the tablets on your table for more information and to make a bid, all in aid of OcuMel UK. Good luck!

• Two night Devon break in a hot • Tour of CNN newsroom tub caravan for up to six people and studio from beverly holidays • Family or newborn photo shoot • Tour of the BBC newsroom with with Photogenica Sally Bundock • Professional make-up and hair • Fine wines from Queens Park session with celebrity stylist Alicia wines Poxrucker

• Mid week four ball at Stoke Park • Tour of Aston Martin factory for four people with pleasure ride • Signed boxing gloves and a framed picture from Chris Eubank • Professional photograph by Paul and Nigel Benn Mason; taken this evening and printed onto canvas • Framed Arsenal signed goalkeeper glove and book • Ride in a Lamborghini

• One week stay in a hebridean • Special reproduction of John holiday cottage singer sargent painting

• Personal brand building lunch • L’occitaine gift hamper with Jessica Huie, MBE • Hellofresh box and signed recipe • One hour trial fl ight experience in book by Patrick Drake a light aircraft • Choice of luxury chauffeur tours • One-hour environ ultra-sound from British heritage chauffeur facial from Serendipity Natural tours Beauty • Two places at the hearty table • Signed and framed England v Germany 1966 shirt • Holiday stay in Wales

9 Patient Stories

GLYNIS COLLUMBELL, patient

All was good until 2015 when routine treatments, and hopefully a cure to eye ultrasound revealed recurrence. be developed. Hope for the best my Laser and repeat plaque was not friends! My journey has taken a path successful so my eye was enucleated through the care of some phenomenal in January 2016. My surveillance was oncology teams including Moorfields, increased to 3 monthly but did not Guys, Kings, Mount Vernon and include MRI of my liver. How I wish I Southampton. I am and continue to had known about OcuMel UK then. be indebted to them all. This winding road of referrals is part and parcel In March 2018 a routine PET scan of the ocular melanoma experience! brought the news that my eye Our family has had a very difficult few melanoma had metastasised to my years, the psychological benefit of a liver. I was given a stage IV diagnosis resource like OcuMel UK was and is, and later admitted to a liver unit of enormous benefit to many of us. for resection, but unfortunately a We are so grateful. laparoscopy at the start of the surgery I am Glynis Collumbell, 63 years showed the disease had ‘peppered’ as It also helps me to have a forum young from SE London, wife to the this disease often does, so resection where I can support others travelling ever-patient Mick, mum to three of the one larger tumour was not the this path. If I can make someone wonderful daughters, “nannynanny” to best treatment for me. else’s journey a bit easier that is an 2 grandchildren aged 4 and 1 and a unexpected plus. There is so much we cancer patient with ocular melanoma. One of my daughters found OcuMel are not aware of in relation to realistic UK online and from that point the expectations following treatments and This is my story. support and guidance we have surgery. Although everyone is different received has without doubt altered it is interesting how often you read In 2009 an astute optician checking the direction of my treatment it’s something and like it because that is my vision asked why I had booked empowered me and my family and exactly your experience. the appointment when my vision was has meant that I have travelled this perfect. I explained the shadowing on journey armed with invaluable support OcuMel UK have been the most my field of vision had prompted my from staff and other ocular melanoma wonderful and necessary support, visit and she carried out a dilated eye patients. from the many telephone discussions test. Thankfully, due to her diligence with Jo, a surprise visit in hospital the tumour was spotted. Armed with a much greater knowledge to the inevitable ‘has anyone else and understanding I asked for ever had this’ online conversations. I waited 8 long weeks for a referral referral for chemosaturation as well This charity has opened up so many to Moorfields Hospital and a further as immunotherapy. I was the wrong doors to support my cancer journey, 2 weeks to receive plaque therapy. tissue type for the immunotherapy emotionally and practically during a I was offered no genetic tests, no but consider myself enormously lucky time when I have to deal with such discussions about prognosis or to have fulfilled the criteria and been a poor prognosis.OcuMel UK and information about options available to selected for chemosaturation. I have its team work so hard to ensure all me. After treatment I had to organise just had my second treatment. The patients with this rare disease get my own regular blood tests and next milestone is scans after the the best treatment and support. As a ultrasound scans by harassing my 3rd! This is without doubt the best patient, this is enormously important. GP. It was clear very early on that option for me, and had my family Every breast unit in the country has standardisation and guidance was not been in contact with OcuMel at least one breast clinical nurse non-existent for ocular melanoma and UK I would not have known about specialist. Having a nurse for ocular I really was left in the dark to fight this it and would have missed the boat! melanoma will make such a huge alone. This has hopefully given me the best difference to me and all patients. option for some time to allow other Thank you for helping OcuMel UK on the road to the country’s first specialist nurse for ocular melanoma. As patients we deserve 10 this level of care. _

RALPH MCMURRAY, patient

local hospital and requested an understand the condition. This is not urgent referral. only important for patients like myself, I was seen by my local hospital who have been diagnosed with this the next day and had numerous cancer for life, but for newly/recently examinations, scans and x-rays and I diagnosed patients to have this was told that I was being referred to a support from the start of their journey. specialist clinic, Moorfi elds Hospital. A couple of weeks passed and after I really think that OcuMel UK are numerous tests at Moorfi elds, I was much like a family, we support each informed that I had a large rare other, we all have different stories, tumour called ocular melanoma. journeys and hills to climb and Various treatments were explained to outcomes. Up until now Jo, Sonya me, but because of size of the tumour and Nicolette have managed to it was decided I would have my right support us all incredibly well with eye removed. everything that they do. Recruiting the nurse (or two) will take this off From my personal perspective, having their shoulders and allow them to I am Ralph McMurray, 68 years of never had an eye test, it made me work on raising awareness of ocular age, husband to Anne, father to wonder what my situation may have melanoma and moving into research Krystle and Jade, grandfather to been if I had left it any longer. I cannot so that we can all have hope for our 10-month-old George and a patient emphasise strongly enough the future, and one day fi nd a cure for this with ocular melanoma. importance of eye examinations in the terrible disease. early detection of numerous illnesses This is my story. especially ocular melanoma. It really Thank you OcuMel UK and could save your life. everyone that is supporting make Before this journey began, I had no this happen. symptoms, never suffered headaches I am so grateful to have found OcuMel or blurred vision. There was nothing UK, they have helped get me through It means so much to me and to indicate to me that anything was every step of my journey. From my my family. wrong. initial diagnosis, they have supported me and empowered me to challenge For a number of years I had been medical decisions that I would not buying “off the shelf”‘ glasses to help have had the confi dence to do alone. with my reading. For nearly a year, Thanks to this small charity, I am I had been noticing “fl oaters” and a now being monitored by people who ‘light’ in my right eye periodically but I understand me and my rare condition hadn’t really paid it much attention. and most of all, my family’s concerns for the future. Then, at 66 years old, with some prompting from my family, I decided to I was delighted to hear about the have my fi rst ever eye test. recruitment of a dedicated OcuMel During the eye test at my local UK nurse. Understanding the Opticians, Wardale Williams, the challenges that patients struggle with optician identifi ed a “Detached Retina” means that I know fi rst-hand just how and was concerned as there was important it is to have someone that is evidence of an older detachment medically trained that can advise and which looked as though it had repaired itself. He contacted my

11 Patient Stories

LORRAINE WILBY, patient

My fi rst warning sign was a severe that I didn’t have the strength to go pain which came on suddenly at work through with my family, questions in early December I couldn’t look up that I wanted to ask to people who or down, but by the time I got home it understood and had the answers. had gone, it was a bit sore, but there was nothing I could put my fi nger OcuMel UK have been there at the on. Looking back now, I was forever other end of the phone to offer me cleaning my glasses. guidance, reassurance and support. I have been introduced to online When we arrived home from London, support groups and have met people I decided there might be something that have been there to understand wrong with my eye and decided to my darkest fears, without question, seek medical advice. After attending day or night. an appointment at the opticians, I was referred to SpaMedical eye hospital Without OcuMel UK I would have with a suspected cataract. remained naïve to the surveillance options available. I am Lorraine, aged 53, from The lady who saw me spent a long Wakefi eld West Yorkshire, partner to time looking at my eye, and then got Recruiting an OcuMel UK nurse will Stephen, mum to Lauren, grandparent someone else to look. They both mean that more patients with ocular to my 1st grandchild, Adrian who is agreed it wasn’t a cataract. Then melanoma can receive specialist due on 11th January 2019 and I am they called for a surgeon in the support. Having an expert that can an ocular melanoma patient. clinic to have a look. By that point I explain the terminology used in This is my story. was a nervous wreck. I knew it was diagnosis and results is a massive something serious. thing. Not being able to understand is one of the most stressful things In December 2017, I was busy living I was referred to the Royal and having a dedicated nurse to talk life to the full. Dad had just recovered Hallamshire Hospital in Sheffi eld, things through would be a huge relief. from bowel cancer, and the family had where tests concluded I had cancer. lots to celebrate. Stephen and I were The tumour – which measured 23mm Thank you to everyone that is ending the year with exciting trips to by 9mm - had grown aggressively and making this happen for us. Disneyland Paris and London for New had caused the retina, a loose layer Year’s Eve, I had every reason to feel at the back of the eye, to become positive about the future. detached. This meant doctors had no option but to remove the eye Nothing could have prepared me for completely. the devastating news I was about to receive. It’s diffi cult for people to understand. They think that now I’ve had my eye In January, I was diagnosed with out, life can go back to normal. It ocular melanoma, a type of eye can’t. I’m blind in one eye and my life cancer, and by the end of the month has changed forever. I’d had my left eye completely removed. My parents Alec and Barbara have been so supportive throughout this. Even now, 6 months post-surgery, Besides Stephen and Lauren, my best I’m still asking how you get cancer friend Mandie Rhodes has been my in your eye? I’m just shell-shocked. rock. There are some things however Absolutely shell-shocked.

12 Plea from Tamara

We are looking for a Patron for OcuMel UK to help us reach out to more people with this condition.

This Patron would join a highly motivated and valued group of people, all of whom share the same goals - to increase awareness of Ocular Melanoma so that it can be caught early and improve the lives of patients and their families.

Patrons could help us achieve these goals by:

• Promoting their support of OcuMel UK to increase public awareness of ocular melanoma and our charity. • Helping to increase our interaction and following.

As we are such a small charity, it is often hard to reach as many people as we would like.

Having a rare cancer can also be isolating and so having someone in the public eye who is promoting awareness about the disease would mean that more patients can be supported by OcuMel UK.

As a patron, you would:

Be invited to any events held by OcuMel UK. Receive regular updates on our work. Be invited to put forward any suggestions or ideas.

If being a patron of OcuMel UK is something that you would like to consider, please contact Jo Gumbs on 07775 414 615 or Joanne Morgan on 07779 283 661 who will be happy to discuss this in more detail and provide further information.

Your support is greatly appreciated, and we hope that you will consider joining our very special OcuMel family.

Tamara Rimmer, Secretary to OcuMel UK and patient with ocular melanoma

13 The Future

As we are a small charity, our expenses are carefully managed but as with all businesses, overheads exist. We work with our members in mind and so we have taken the decision to keep the care coordinator role in house rather than tied to a particular hospital or region. This will enable them to support all patients in the UK who need their help through our helpline and at clinic times on specifi c days. We know this will help us extend our reach to more patients and so, as soon as funds allow, another nurse will be needed. At this point, we can apply to a hospital trust for future funding for one of the positions.

Our work cannot then slow down once patients are receiving the correct support. Our attention will swiftly move to encouraging, and possibly funding, focused research to fi nd a cure. How quickly we move into research really does depend on our resources. If you can help us to deliver results in the timeframe we need, please do consider becoming a large donor, name us as your charity for 2019 or in one of the ways below to help us build a sustainable future.

The level of support we can offer, varies on the fi nances we have available and so we have shown some of the ways you can support our work.

Our Fundraising Strategy journey has taken us here

£+ £90,000 Expanding MRI Scheme £30,150 Nursing Support Team & £3,000 Supporting Access To MRI Supporting £14,500 Patient research into £65,000 Scheme Awareness/ Booklets Ocular Melanoma 3 year period 15 Info & Support Campaigns & PR x 1000 patients

Running total £65,000 £79,500 £82,500 £112,650 £202,650 £202,650+

14 _

Funding Ideas

Choose OcuMel UK as your Charity of The Year

CSR Worksop are a team of companies within a distribution centre. They have been incredible this year and came up with novel ways of raising money. By schemes such as charging for priority car parking places or selling the used lightbulbs that were replaced, the firms are firmly on track to hit the £20,000 goal they set themselves.

Become a large donor. Arrange a regular donation

By becoming a large donor with OcuMel UK, you will Arrange a regular donation. A standing order means you can have the opportunity to make a real difference to people make a donation each month towards our work and it be free of with ocular melanoma. We would invite you to meet processing fees. It also helps us to predict our income so we with us each year to show how your funding has been can plan more effectively. used and our plans for the next 12 months. These small meetings, arranged by Joanne Morgan, are sure A private evening with our money can’t buy to be a great night in themselves, but will offer you experiences the security that your help has been carefully used to provide the most benefit to patients and their families. Would you be prepared to host a small private function in your home or at a venue of your choice, treating Sponsorship guests to an unforgettable evening with their favourite celebrity? Are you able to offer a special experience that This is a great way to show the areas of our work that could be used to generate funds? If you can help us are important to you. The below projects are being generate funds in this way, please do get in touch. delivered and are looking for sponsorship. • The training for the care coordinator nurse • The production and distribution of an Ocular Melanoma Patient Booklet • Access to MRI scans scheme • Annual Patient Conference • A strategy co-ordinator role • Psychological support for patients and family members

Get in touch

If you believe in our work, please do consider helping us in the future.

You can do so by contacting Joanne Morgan, speaking with any of the trustees here this evening or contacting Jo Gumbs, on 07775 414615 or [email protected]

Your support really does mean a great deal to us, thank you.

15 OcuMel UK’s Fundraising

We support the most incredible community of patients and family members who all come together because of this rare condition, between them manage to fund most of our work whilst fi ghting this dreadful disease.

Here are their inspirational efforts during 2018:

Gemma Whitchurch, Patient

In June 2017, Gemma, a Structural Engineer and part Army Reserves bumped her head and subsequently experienced slightly blurry vision. An initial hospital visit gave her the all clear, However, weeks later, after returning with the same symptoms Gemma was told that she had a detached retina. Pre-op surgery revealed a large tumour and she was later referred to Liverpool.

“I am quite a practical person and so tried to put all of the overwhelming emotions aside whilst I contemplated the option of enucleation (having my eye removed) or removing the tumour. I decided to have surgery to remove the tumour. I only had my sister with me when I was told that it would be a risk, not just to my eye, but to my life. It was tough”. - Gemma.

After 8 hours of surgery “it was terrifying to wake up completely blind and the pain in my eye was unimaginable. Post-surgery, things didn’t improve and unfortunately for me, everything that could go wrong, did. My tumour was attached to the retina which meant that they had to leave part of the tumour behind and then my eye haemorrhaged. I was so poorly for months”. Living on the Isle of Wight also made weekly mainland hospital appointments a logistical challenge. “I felt so alone and found OcuMel UK which gave me the chance to speak with other patients, ask silly questions outside of hospital times and give me support. It is such an amazing charity and I am not sure where we would all be without everyone.” Despite the many challenges, she has maintained her wonderful positive sense of humour and zest for life.

In May 2018, Gemma organised for herself and 26 OcuMel UK patients to climb Mount Snowdon, Wales, raising an incredible £13,897.50.

Howard Shaw, Friend of a Patient

Richard was fi rst diagnosed with ocular melanoma in 2005 and following removal of the tumour in his eye and subsequent radioactive plaque therapy, he was in good health for 11 years. However, just days before his marriage in December 2016, Richard was given the devastating news the cancer had spread to his liver. Howard and Richard have been close friends for more than 20 years since meeting at University, Howard tells us why he wanted to support us. “Ever since Richard was diagnosed he has received wonderful support from OcuMel UK and that is why I selected them as my charity of choice.

In July 2018, Howard decided to take on a gruelling 160-mile bike ride from Northwich to Llandudno in Wales, spanning over two days and with donations and sponsorship raised an incredible £3,200 for us. Howard told us that “I expect this will make a real difference for OcuMel UK.”

“The support my family and I have received from OcuMel UK has been invaluable. They have provided us with advice on available treatments and links with other ocular melanoma patients which have helped us to build up a strong support network.” - Richard.

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Sophie Brown, Daughter of a Patient

Sophie’s mother, Lesley Baillie, was diagnosed with ocular melanoma following a routine eye examination in 2017. Since diagnosis, Lesley, who was formerly a nurse and her family have been receiving support, information and relevant signposting surrounding latest treatments and trials. To support OcuMel UK, Sophie recently took part in a 5k colour run at Wembley Park, London and raised almost £900, Sophie also runs an online craft and card business and generously donates part of her profi ts to OcuMel UK.

Sophie told us that taking part in the colour run was great fun, but also tinged with sadness due to the reason that she was doing it. “Whilst I cannot take away my mother’s cancer, I can certainly help to fundraise for OcuMel UK and raise awareness of the disease. Amongst other things, OcuMel UK has provided my mother with advice on available treatments and links with other ocular melanoma patients which have helped us to build up a strong support network. We really wouldn’t have known which way to turn if it wasn’t for the support from OcuMel UK.”

Chris Jones, Patient

Chris, a married father with two daughters, was diagnosed with ocular melanoma in 2016 following a routine eye examination. Since his diagnosis, Chris and his family have been supported by OcuMel UK. In May 2018, Chris and four of his friends, were inspired to climb Ben Nevis and raised a fantastic £1,600 for OcuMel UK. “I decided to raise money for OcuMel UK as they are the only organisation which supports people with ocular melanoma. With other forms of cancer there are several charities and support groups who can help but this is not the case with eye cancer. OcuMel UK have been a tower of strength to me and my wife Carol, and I wanted to raise as much money as possible for them. I am very grateful for all the people who supported me through my fundraising efforts.

“OcuMel UK has supported me in many ways including directly through their online community where you can speak to others who have been through what you are going through and can offer you invaluable support. They also provide valuable information about the latest treatments available for the condition and advances in research which is always encouraging to hear.” -Chris.

17 OcuMel UK’s Awareness Campaigns

As a patient focused charity, our campaigns to date have all been about empowering patients, raising public awareness of ocular melanoma and the importance of regular eye tests.

Eye Matter Too Campaign

The Eye Matter Too Campaign, launched annually on Rare Disease Day. The objective is to provide a safe platform for people affected by ocular melanoma to voice their personal experience with this rare cancer, by delivering their own personal messages to the public via social media.

Everyone’s individual experiences will be unique and different, however participants will all be asked the same question:

“What is it like to be affected by ocular melanoma?”

The aims of the campaign are:

To highlight the differences in research, care and treatments available to those with a rare cancer compared with the more common cancers.

To increase the number of followers on OcuMel UK social media pages.

To raise funds for OcuMel UK, to support research.

18 _

IPATCH for Campaign

This annual campaign is launched every 3rd Friday in May to encourage people to have regular eye tests, to value the importance of their sight by experiencing a day with monovision It is no exaggeration and provide an opportunity to talk to say that having regular about the campaign and their eye examinations could connection with ocular melanoma. save your life. The aims of the campaign are:

To raise awareness of the importance of regular eye examinations.

To encourage as many people as possible to book an eye examination for themselves and their families.

To reach people living with ocular melanoma that do not know about OcuMel UK.

To raise awareness for the need for an OcuMel UK Nurse, with the aim of this role supporting patients, providing information and training about ocular melanoma to medical professionals and opticians.

To increase earlier detection of other conditions leading to more successful treatments.

19 Friday 5th – Sunday 7th October 2018 Hotel Novotel, Cherry Lane, Heathrow, UB7 9HJ Working TogeTher To Find a Cure

OcuMel UK and MPNE are delighted to bring people affected by ocular melanoma together with a FREE 3-day conference providing the latest information on ocular melanoma and rare cancers. This three-day patient conference will include talks from some of Europe’s specialists in the field of ocular melanoma providing information at both introductory and at a more advanced level. Speakers include: • Professor Sarah Coupland, University of Liverpool • Dr Pieter van der Velden, Leiden University Medical Centre • Dr Bertil Damato, Oxford University • Dr Ioannis Karydis, University of Southampton You will also have the opportunity to meet other people affected by this rare cancer with plenty of time built in to get to know others in similar situations. As well as learning the most up to date information on the condition and it’s treatments, optional Wellbeing Workshops will be available, including an introduction to Yoga, Meditation and Mindfulness Techniques.

To apply to attend this special event and to see the full conference programmes, please visit: www.ocular.eventbrite.co.uk. If you have any questions please contact Sonya on: 0044 1753 357771 or [email protected]. Financial assistance available to help with travel costs.

A patient-focused charity, providing emotional MPNE’s key principles are: and practical support on a national level to people • Patients first affected by ocular melanoma. • Evidence based decisions We also organise annual patient conferences, • Solutions not problems produce bulletins, newsletters, launch and manage annual campaigns & events, support all awareness This has made us one of, if not the, most influential and fundraising activities. and effective patient advocacy groups in the World. • Helpline 0044 300 790 0512 You can read more about our efforts to improve patients’ lives here: • www.omuk.info • www.melanomapatientnetworkeu.org 20

CB1489 Donation forM Supporting People with Ocular Melanoma

Your Details 1 Name: Telephone Number: Address: Email Address: Are you: Already a member of OcuMel UK Interested in joining Not a member of OcuMel UK

Please complete one of the two boxes below & the Gift Aid Declaration if relevant

one-off Donation 2 I wish to donate the sum of £ to OcuMel UK (Reg Charity No. 1147506). By Cheque Postal order CAF voucher (please tick as appropriate) made payable to ‘OcuMel UK’ If this is a donation in memory, please give the name of the deceased and your relationship to them:

If this donation is the result of a fundraising activity you arranged, please tell us what you did:

MonthlY stanDing orDer 3 Please make payments and debit my / our account number: Sort Code: In accordance with the following details: Pay CAF Bank Ltd, 25 Kings Hill Avenue, West Malling, Kent (40-52-40) for the account of OcuMel UK (ac/no 00022922) the sum of £ per month until further notice, Quoting ref: (to be inserted by OcuMel UK) Starting on: (please leave at least one month from today) Signed: Date: Name and Address of your Bank: (including postcode)

gift aiD Declaration | Boost Your Donation BY 25p of gift aiD for everY £1 You Donate 4 Gift Aid is reclaimed by the charity from the tax you pay for the current tax year. Your address is needed to identify you as a current UK taxpayer. I want to Gift Aid the donation above and any donations I make in the future or have made in the past 4 years to OcuMel UK

I am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations in that tax year it is my responsibility to pay any difference. Signed: Date:

other waYs You coulD support ocuMel uk 5 Did you know you can also donate online at www.ocumeluk.org/donate or by text OMUK20 followed by a space and then £1.00, £2.00, £3.00, £5.00, £7.00 or £10.00 to 70070 Please tick relevant box: Organise an fundraising event in aid of OcuMel UK Volunteer for us or join our Trustee Board Sign up for annual Eye Patch Day to help raise Leave a legacy to OcuMel UK in your will awareness of ocular melanoma Share some of your knowledge with us

CB1398 Donations Form

Contact: OcuMel UK, 139 Langley Road, Slough, Berkshire, SL3 7DZ Charity Registered in England No. 1147506 Special Thanks

A huge thank you to Markerstudy, who are the proud principal Special Thanks List: sponsor of this evening, introduced to us by patient Becky Brock. Richard Blanshard Markerstudy Group is an energetic and highly innovative organisation, primarily and Terry Jones known for its association with the insurance brands, Markerstudy, Zenith and For filming and editing tonight’s Insurance Factory. plea video. Established in 2001 and employing around 3,000 staff in locations throughout the UK, they are proud to have been named 11th in ‘The Sunday Times Best Dobs Vye 100 Companies to Work For’ in 2015, and ranked within the top 30 Best Big Who has kindly given permission for Companies to Work For in 2017. us to use his music during tonight’s plea video. Markerstudy Insurance Services Limited is responsible for the marketing and distribution of insurance products and are committed to their ethos of ‘putting Unicorn Events the fun into insurance’ for the good of their customers, employees and the Thanks to Mark and his team for community. ensuring our technical requirements for the evening have been catered Working with over 1,000 UK brokers and intermediaries to provide attractive policies to suit their customers’ needs. for.

Paul Hoban at London Wealth Thank you to Wildstone for supporting this evening, Management introduced to us by Sally Bundock For their generous contribution. Wildstone is the largest UK outdoor advertising consultancy. They unlock opportunities for designing and building premium digital outdoor advertising Alicia Poxrucker sites. For supporting Joanne Morgan with hair and make-up for this evenings MC and entertainers. Special thanks to donors of our silent and live auctions: Damian Cox, Katy Lamsin, Sally Bundock, Ian Simpson, Patrick Drake, Abstract Hairdressing, Chris Eubank, Bob Wilson, Marlene Ralley, Jessica Huie, Alcom Computing, Beaconsfield Serendipity Natural Beauty, Karen Cochrane and Sarah Webb, Alicia Poxrucker, Aston Martin, Paul Mason, Kevin Gomez, Stoke Park, British Heritage To Hani and his team for always Chauffeur Tours, The Hearty Table being there!

22 We are delighted to support OcuMel UK

23+44 (0) 20 7313 9571 [email protected] wildstone.co.uk OcuMel UK, 139 Langley Road, Slough, Berkshire, SL3 7DZ 0300 790 0512