After a challenging couple of years, with large events being cancelled and postponed, we were so excited to finally see the London Marathon going ahead, and on 3rd October 2021, we had 13 people take part in the London Marathon & Virtual London Marathon in support of Caring Matters Now.
“My wonderful sister Rachel has done so much fundraising for Caring Matters Now. She’s ran the Belfast Marathan, the London marathon, she’s jumped out of the sky… she’s much more brave than me! Where she has run two whole marathons, I have ran a leg! Whenever the London to Paris cycle was announced as a…
We met for our Support Contact Annual Training Day on Sunday 26th September; this was the first time we had been able to meet as a team since November 2019. It was exciting to be able to see each other face to face again, and welcoming new support contacts too! Our Support Contact Team is…
Our annual conference took place on Friday 7th May – Sunday 9th May. During the 3-day conference we hosted 16 online events via zoom, catering for 598 members. Every family and individual who registered to attend the conference received a welcome pack in the post, which include event goodies for the specific events they were…
Teens O2 Challenge Written by Hannah Cree, Support Pathway Coordinator Pretty soon into my role as Support Pathway Coordinator, I heard about the Teens Challenge at ‘Up at the o2.’ This sounded like a real challenge for our teens and one that would require courage! I knew I wanted to support our teens on the…
Following the huge success of our HOW DO YOU C ME NOW? photographic exhibition in 2019 and the release of our HOW DO YOU C ME NOW? photographic book in 2020, this year we are continuing to build upon the momentum of raising global awareness of CMN by launching our first HOW DO YOU C ME NOW? professional film, featuring the life story of an adult member living with CMN, Cheryl Shaw.
My name is Tracy, and I am the proud mother of Rey, the little beauty that’s on the cover of this edition of INSPIRE. Around 70% of Rey’s body has CMN ranging from small to large. Before I begin talking about Rey, it feels that my story wouldn’t be complete if I didn’t start with…
As from July 2021 Caring Matters Now support literature will be available to pick up from the CMN clinic at Great Ormond Street Hospital.
Thanks to all of our Young Ambassadors who attended our Communications and Social Media Training Workshop on Tuesday 31st August.
Although living with CMN can be challenging, it’s can also be positive for some young people too. Ella Guest, a researcher at the Centre for Appearance Research in Bristol, has been working with Caring Matters Now to find out more about the positive aspects of living with CMN by using photographs.
As I’m sure all parents of children with CMN feel, it was a shock when Arizona was born with a large birth mark on her back. Although our midwifery and paediatric teams were fantastic, they hadn’t seen CMN before and were unsure of what it was. We were eventually referred to Caring Matters Now and…
My name is Jamie, I am 15 years old, live in Croydon and am in year 10. I have a large CMN on my back and I have had 2 operations to remove CMN on my face. I have had a lot of experience Caring Matters Now, all positive, and I’m going to do the…
Hello, my name is Luke. I am 21 years old. I have been involved with Caring Matters Now since 9 months old when my parents reached out to try and find information about the birthmark I was birth with on the left side of my face, ear and scalp. One of my first ever procedures…
Our annual conference took place on Friday 7th May – Sunday 9th May. During the 3-day conference we hosted 16 online events via zoom, catering for 598 members. Every family and individual who registered to attend the conference received a welcome pack in the post, which include event goodies for the specific events they were…
Are you living with CMN aged 11-17 years? If so, we would love you to take part in a new research study the Centre for Appearance Resarch has launched called TABI (Teen Appearance and Body Image) which aims to explore young people’s experience of appearance and body image using an online survey.
Ethan-Blake was born on September 12th 2015 with a birthmark covering the whole of his back from his shoulders to his bottom and around his sides. After a few days of worrying and wondering we met a paediatrician who was able to diagnose him with Congenital Melanocytic Naevi (CMN) and then at 18 months with…
Are you Somali and do you have CMN affecting the face? Researchers at the Centre for Appearance Research want to find out about your experiences!
My name is Phoebe, I am 16 and I was born with a giant CMN on my face and satellites all over my body. The process to remove my facial nevus began when I was one week old and finished when I was six. I have a skin grafted face and over 500 satellite Nevi.…
We are excited to announce further developments in our adult support team with the introduction of a new support contact for our older teens and young adult members.
I’m Katy, and the last time I wrote my story for Caring Matters Now, I was 12 years old and had just started at secondary school. Since then, I’ve danced with the English Youth Ballet, competed with my university dance teams, and worked at Camp America. More recently, I’ve worked on a cruise ship and…
Caring Matters Now have successfully secured a grant from VTCT Foundation and have teamed up with Centre for Appearance Research to create a resource to support young people with Congenital Melanocytic Naevi. This will be a freely available resource that contains important information about CMN and how to cope with common issues that young people with CMN may face.…
In conjunction with Rare Disease Day 2021, Caring Matters Now is partnering with CMN patient support groups across the world to raise global awareness of Congenital Melanocytic Naevus… and you can join in with us!
A huge THANK YOU and CONGRATULATIONS to all those who have completed a monthly challenge so far!
As a fifteen-year-old with CMN, which covers my back arms and legs, I have endured many hard times as well as amazing and inspiring experiences. Having CMN evidently makes me stand out when I don’t necessarily want to and makes people stare when (you guessed it) I don’t want people to stare. Having these special…
After much deliberation we are delighted to announce that the winner of the 2020 Jessica Ma Award is……..
As 2020 comes to an end, we all need something positive to focus our attention on for 2021, so why not sign up to our ‘Stepping up for CMN’ challenge? You will not only make 2021 a year to remember, but you will also be supporting the work of Caring Matters Now by raising vital funds to continue our work. It’s a win-win challenge for everyone!
We are thrilled to announce the establishment of Caring Matters Now Ireland. Over the past 24 months, the Caring Matters Now Board of Trustees have been working towards establishing a sister charity in Ireland.
We are thrilled to announce Veronica Kinsler has been awarded an NIHR Professorship to continue to research targeted therapies for CMN and melanoma.
Caring Matters Now is committed to supporting all those affected by Congenital Melanocytic Naevi. We continually review our support strategy to consider new ways of ensuring the support we offer is most helpful to all our members. Over recent months, we have been putting in place a new adult support team. This exciting development will…
On Saturday 26th September we held our cake sale in aid of raising money for Caring Matters Now and to raise awareness about the ‘How Do You C Me Now’ book.
It’s free to send our Caring Matters Now eCard to your friends and family. Rather than sending Christmas Cards his year, you can send an eCard and make a donation to help support Caring Matters Now.
My name is Anne and I have a giant CMN that covers my back and multiple smaller moles mainly on my legs. The main CMN was almost black when I was born. It gradually lightened over the years and is now, at age 60, light brown. There was very little information available for my parents…
I am Nicholas Nikiforou, I am 13 years old and I have a vision; for all individuals to be accepted in society for who they are. My outlook on life is, if we all embrace each other’s differences, no matter what they are, the world will be a better place. I have a passion for face equality and kindness. I campaign through my art, singing, and motivational…
In September 2020, Caring Matters Now launched our much-anticipated photographic book ‘HOW DO YOU C ME NOW?’ This stunning book celebrates the beauty and lives of all those affected by CMN and encourages the world to embrace visible differences. Featured within this beautifully presented hardback are the 30 photographic portraits exhibited at the OXO Gallery, London in 2019 as part of our HOW DO…
We would firstly like to say a huge thank you to everyone that registered their interest in running the 2021 Virgin Money London Marathon, for Caring Matters Now. It is encouraging to know what some people really are prepared to put themselves through for our charity, thank you. As we mentioned we are only allocated…
Take part in our 2021 Coffee & Cake Morning and receive your very own FREE Goodie Pack. Saturday 16th – Sunday 17th October 2021 This is a fun and easy way for everyone to get involved and help raise vital funds for Caring Matters Now. You can organise your coffee and cake morning at home,…
HOST YOUR OWN SOCIALLY DISTANCED COFFEE & CAKE MORNING You can organise your socially distanced coffee and cake morning in the garden, on your street, at your school, outside the community hall, or at your place of work; bringing together your family, friends, neighbours and work colleagues in a safe way! Host your Coffee &…
If you are aged 18 years and above, we are seeking your help to develop a list of CMN clinicians in the UK.
Good news! AmazonSmile is now available in the Amazon Shopping app on iPhones and Android phones, making it even easier to support Caring Matters Now!
We’re inviting you, your family and friends to take part in the 2.6 Challenge from Sunday 25th April 2021 to help Caring Matters Now to continue its work supporting children and adults affected by Congenital Melanocytic Naevi.
You have the opportunity to climb London’s superstar attraction whilst getting to know other Caring Matters Now teenagers. We are seeking a team of teens with CMN (aged 13 – 19 years) to climb the rooftop of the O2 Arena and at the same time raise vitals funds for Caring Matters Now. When: Saturday 25th…
Thames Bridges Trek – 11th September 2021 Setting out from Putney Bridge, this 25km trek will take you east towards the City, zig-zagging over London’s finest bridges, each with its own fascinating story. A great opportunity to walk and explore the best of London and its historic bridges while having fun and raising money with…
Researchers from the Centre for Appearance Research at UWE Bristol are looking for people with CMN who are experiencing psychological / social difficulties related to looking different, to test ACT It Out, a prototype mobile app.
My story by Ryan (with a little help from mum) I was born on the 10th December 2003 with CMN and NCM. My birthmark covers my bum and I have hundreds of smaller moles all over my body. The moles on my brain also cause me to have learning disabilities and I also have ASD.…
As a teenager with CMN, I have been through a lot, including name calling and mimicking. My CMN is located on my nose and right cheek. I had my first of 6 operations at 8 months of age at Great Ormond Street Hospital, all performed by the wonderful Mr Bulstrode. I first attended a Caring…
Can we please ask you to take a little time to participate and help us all better understand the support needs of you, as parents of children with CMN.
We are pleased to announce that Caring Matters Now has a guaranteed place in the 2021 Virgin Money London Marathon.
Hello, my name is Cheryl and I was born with CMN all over my body. I did not have CMN on my face when I was born; they started to develop a few weeks after birth. Up until around 11 years old I was a happy child and people staring or asking me questions about…
On 26th – 28th June 2020, we held our first ever online CMN Conference. We welcomed 82 families and individuals with CMN to our programme of events – it was wonderful to see you all!
We are excited to announce that Ronnie the Bear has had babies (!!) – and we now have lots of Ronnie the Bear’s ready to be loved by all our members and supporters. You can now purchase your very own Ronnie the Bear.
We are excited to launch the Young Ambassadors Programme for all registered young people affected by CMN (13 to 19 years).
Melanoma arising in people affected by CMN is very difficult to treat. Based on knowledge of the genetics of CMN a drug has been used recently to try to treat melanoma in children, with some good effects, but it is usually not strong enough to reverse the melanoma completely. Other drugs are therefore needed to…
We’re inviting you, your family and friends to take part in the 2.6 Challenge from Sunday 26 April to help Caring Matters Now to continue its work supporting children and adults affected by CMN.
You are invited to take part in our creative competition! We would like you to turn our CMN logo into a beautifully colourful rainbow design in support of our amazing NHS.
Set yourself a lockdown challenge by climbing Mount Everest – at home! How? By climbing your stairs 3000+ times!
Dear Friends I do hope that during this difficult time you and your family are taking care and keeping well. Like other charities, our Trustees and members of staff, have had to make big adjustments over the last couple of weeks, yet with the aim of continuing to be there for you during these uncertain…
Are you stuck at home? Bored of schoolwork? Want something positive to focus on?
Are you aged 14-17 years old and have visible CMN or numerous CMN either on your face and/or arms/hands?
Do you think having CMN can be a positive experience in some ways?
We want to hear about your experience as a young person with CMN.
Statement from Professor V Kinsler “There should be no increased risk of Covid-19 to any individual from having Congenital Melanocytic Naevus on the skin. There is no scientific evidence that there is any problem with temperatures in anyone with CMN over and above that seen in those with normal skin.” If anyone has any concerns…
As all of our thoughts are on the COVID-19 situation, we wanted to share an update as to how Caring Matters Now is responding. The safety and health of our community is always of the utmost importance to us. In an effort to protect our community, we have decided to postpone all face-to-face support gatherings…
Emotional, Empowered and Excited My experiences of living with CMN I was born with CMN covering most of my back and several more CMNs on my legs too. Throughout my childhood I often faced tough days with being stared at and called names on the school playground. Those early years were difficult; I can remember…
After much deliberation we are delighted to announce that the winner of the 2019 Jessica Ma Award is……..
In conjunction with Rare Disease Day 2020, Caring Matters Now is partnering with CMN patient support groups across the world to raise global awareness of Congenital Melanocytic Naevus… and you can join in with us!
As part of our alliance with Eurordis, we are asking all our CMN members to consider taking part in this survey.
WE have some very exciting news to share with all our members and supporters. Throughout December, we are seeking celebrities to help raise the profile of CMN through social media platforms. Alongside raising positive awareness of CMN, our aim is to: give a clear message to the world; to love the skin you are in!…
Hi, I’m Stacey and I was born with a large bathing trunk nevus and multiple satellites all over my face and body. Despite being different to other kids I had a really good childhood and I owe so much of this to my parents. Mum and dad never treated me any different. We went on…
The festive period is a time for giving gifts to family and friends. Instead of buying unwanted gifts such as socks or sweets, hankies or hand lotion, why not donate the gift amount to Caring Matters Now. You will receive a gift voucher for the amount you donated, which you can send onto your family…
In July we held our first residential support conference at Liddington PGL Conference Centre with 112 attendees. The crammed packed 3-day programme catered for all ages, including fun outdoor pursuit activities for the children and teens, off-site activities for our adult members, psycho-social presentations and workshops for parents, adults and teens affected by CMN, plus…
Hi everyone! My name is Ronnie, and I’m the new Caring Matters Now mascot! I’ve been given a mission, and I’m so excited to start! My mission has two aims; first, to raise global awareness of Congenital Melanocytic Naevus. I’m going to do this by travelling all over the world, and posting pictures of my…
Our Warrior Princess Written by Eve’s mum – Sabrina After a perfectly normal pregnancy, Eve was born on the 8th August 2018 with a very rare skin condition called Congenital Melanocytic Naevi (CMN). This is a gene mutation that caused more than half her body to be covered in moles/birthmarks. An MRI at 6 days…
Veronica Kinsler is now the Professor of Paediatric Dermatology and Dermatogenetics at Great Ormond St Hospital for Children and the UCL Institute of Child Health. This is great recognition for the CMN research and will continue to raise awareness of CMN worldwide. Some other very exciting news about CMN research at GOSH is that the…
Be the first to get your hands on our brand new ‘how do you C Me Now™’ tees! To celebrate the huge success of our global awareness campaign #howdoyouCMeNow, we have produced branded clothing for all ages. We want to continue raising positive awareness of CMN, giving a clear message to the world; to love…
This Friday our three brave and rather crazy challengers are departing for the ultimate challenge; Stok Kangri Summit Trek, reaching 6,114 metres – which is 219 metres HIGHER than Mount Kilimanjaro! Meet the men taking on this tough challenge….. Nick Inspired by his son James who was born with CMN, Nick achieved his goal of…
So, on Friday 14th June Nick, Norman and Phil will be departing to kick start the Stok Kangri challenge to summit India’s highest trekkable peak at over 6,000m. They will start in Leh the regional capital in Ladakh one of the most exciting Indian mountain regions. This challenge is part of our 7 challenges on 7…
We are thrilled to announce Children in Need has granted our charity £10,000 to fund our support events across the country throughout 2019-20. The funds will support the CMN Conference Weekend costs, along with all the regional gatherings planned throughout the year. Furthermore, Children in Need have agreed to continue the funding for the following…
Photographic Exhibition In 2019 Caring Matters Now launched a photographic series featuring 30 inspiring individuals affected by Congenital Melanocytic Naevi (CMN) from 5 continents, representing 13 countries. The series of images, entitled HOW DO YOU C ME NOW? were exhibited for 12 days in central London at the [email protected], Oxo Tower Wharf. The project began in…
What a storm of media coverage we have experienced this week in preparation for the ‘HOW DO YOU C ME NOW?™’ exhibition launch. Our coverage has gone worldwide, and the response has been phenomenal. SKY NEWS COVERAGE Link to the article on the Sky News website Link to another article on the Sky News website…
Introducing Alkin Emirali Alkin is a screenwriter, director, lecturer and an established martial arts instructor. He was born with a few prominent moles on his face that have proliferated throughout his life. He didn’t meet anyone else affected by CMN until his late thirties, when he connected with Caring Matters Now. Alkin is one of…
Callum White Callum is an easy going 17-year-old who lives in Gloucestershire. Callum is studying to be a software developer, with a passion for mountain climbing, cycling and running. Callum was born with CMN covering the whole of his right arm and hand, along with smaller CMN marks over the rest of his body. Callum…
Scarlett Clarke Scarlett is a mature, self-assured and friendly 13-year-old, currently living in a small community within the Cotswolds. Scarlett is passionate about the Arts, a talented actress and dancer who has recently been signed to a London talent agency. What sets Scarlett apart from her peers is her CMN, which covers the majority of…
We are very excited to announce the confirmed press coverage schedule in the lead up to our ‘HOW DO YOU C ME NOW?™’ exhibition launch! Here is the planned schedule of TV, radio, and online coverage expected next week…. get ready to set your TV planners! Monday 11th March BBC Breakfast – 7.40am Live interview…
The ‘HOW DO YOU C ME NOW?™’ photographic series features 30 children and adults born with Congenital Melanocytic Naevus (CMN), representing 13 countries on 5 continents. The uniquely striking series of images launches at the Oxo Tower London in March 2019, before touring globally. HOW DO YOU C ME NOW?™’ aims not only to improve…
2-year-old Hope travelled with her parents all the way from Australia to feature in the HOW DO YOU C ME NOW? exhibition series. Here you can read Hope’s story, written by her incredible mum, Karyn. Four years ago, Matt and I were excited at the prospect of meeting our baby. Not sure if we were…
Agnieszka Pałyska Introducing you to Agnieszka Palyska, travelling from Poland to feature in the ‘HOW DO YOU C ME NOW?’ exhibition series. As you read Agnieszka’s inspirational story, you will understand why the Caring Matters Now Board of Trustees are so grateful to Agnieszka for her involvement in this very special and unique photographic series.…
Fay is 14 years old from Cambridgeshire, a self-assured and friendly teenager who loves to hang out with her friends. Fay has been dancing since the age of four, competing in solo, with a partner and as part of a team; winning various medals and qualifications in national competitions. What sets Fay apart from her…
Since June 2016, Caring Mattes Now has been working in partnership with the world-renowned photographer Brock Elbank to produce the ‘HOW DO YOU C ME NOW?’ exhibition series, featuring some of the most inspirational children and adults affected by CMN in the world.
My name is Katie Arends (29) and I was born with CMN covering both my arms, shoulders and head. Between the ages of two and four, I had several operations to remove some of the larger moles from my arms and shoulders. My mum has always worried about whether she made the right decision but…
Caring Matters Now established the Jessica Ma Award to publicly acknowledge and remember Jessica’s outstanding and unique contribution to our charity. The prestigious Jessica Ma Award is for an individual or group who have gone above and beyond in raising funds for Caring Matters Now.
Yulianna Yussef is internationally recognised for raising global positive awareness of CMN through her large social media following on Facebook and Instagram. Caring Matters Now trustees are thrilled to have Yulianna partner with the charity through supporting the ‘HOW DO YOU C ME NOW?‘ exhibition series.
Over the past 24 months, Caring Matters Now has been working in partnership with the world-renowned photographer Brock Elbank to create a series of positive portrait images featuring some of the most inspiring children and adults affected by CMN from around the world, representing 13 countries on 5 continents.
5th-7th July 2019 , Liddington PGL Conference Centre. We have been overwhelmed at the number of bookings for our first ever CMN Conference 5-7th July 2019 at Liddington Conference Centre. So far a fantastic 23 families have booked! Why not join them? Take advantage of our NEW YEAR SALE! BOOK BY 18th JANUARY 2019 TO…
We are seeking any enthusiastic cyclists or those that just fancy being a cyclist to challenge themselves for Caring Matters Now! Sign up to the Nightrider Challenge 2019 to raise vital funds for our charity. This is a 50km or 100km cycle ride throughout the night. Choose your distance and then choose from one of…
We are very excited to invite all our members to the first ever Caring Matters Now Conference, taking place 5th-7th July 2019 at the Liddington PGL Conference Centre in Wiltshire.
Today we are very excited to introduce you to our brand-new publication……’INSPIRE’. This is our new annual magazine which includes lots of encouraging and exciting news stories relating to the work of Caring Matters Now and the CMN research.
Well Christmas is fast approaching and there are many ways you can support Caring Matters Now, in some cases without it costing you a penny more!
In early 2018 an exciting global initiative called Naevus International was established.
This new and exciting international initiative involves a cross-disciplinary partnership between 5 important teams led by Dr Veronica Kinsler.
Over the past 24 months, the CMN trustees have been working in partnership with the world-renowned photographer Brock Elbank to create a series of stunning portrait images of children and adults from across the world, affected by CMN. The series includes all ages, both male and female, with 13 countries represented, making this series uniquely…
The festive period is a time for giving gifts to family and friends, so why not give to Caring Matters Now as you do your Christmas shopping this year? Instead of buying unwanted gifts such as socks or sweets, hankies or hand lotion, why not donate the gift amount to Caring Matters Now. You will…
Visit our online Fundraising Raffle page NOW for your chance to win 2 return Virgin Atlantic flights to New York! We have very kindly been gifted two return flight tickets to New York on Virgin Atlantic to raffle and raise vital funds. For your chance to win just make your donation of £10 on the Justgiving Fundraising…
By Mark Melia My name is Mark and I am a dad of a little girl affected by CMN. I am one half of an award-winning music and entertainment duo called Rock Revolution. Over the years we have been very proud to support a wide range of charities, offering our services and providing entertainment at many fundraising events. …
In summer 2013, my mum and I were lucky enough to win two return flights to New York, courtesy of Caring Matters Now and Virgin Atlantic! We decided to use our tickets in 2014, as I was super excited to see New York in the winter! My Dad and brother ended up coming with us…
7 Challenges on 7 Continents Challenge! This little cutie is my three year old daughter Madeleine. Once you look past her gorgeous eyes and beautiful smile, you may notice she has a CMN over her left eye. She also has a bigger one on her scalp. It’s difficult to tell if or how Maddy will…
By Jodi Whitehouse Over the past couple of years, the CMN trustees have wanted to develop our adult support for those adults affected by Congenital Melanocytic Naevi. We have made a start on developing this area by holding an annual adult gathering, which includes Dr Kinsler attending to present her work. This also provides a…
My name is Gemma, I’m 22, grew up in Cambridge but now living and studying in Brighton. I like travelling, music and hope to graduate as a doctor in a few year’s time. But if you meet me, you might notice something a bit different about me; I was born with CMN, in other words…
On Saturday 3rd June we held our 20th Anniversary Celebratory Ball at the Hilton Hotel in Liverpool, the birthplace of Caring Matters Now. The CMN trustees welcomed 220 guests to our special celebration, including Caring Matters Now members, long-term supporters, corporate sponsors and the CMN research team. On arrival a gospel choir consisting of 50…
The 7 challenges on 7 continents adventure continues. Stok Kangri Summit Trek, 14-28 June 2019 Join our amazing team of trekkers for the biggest charity challenge to date! Caring Matters Now is seeking 16 individuals to take on the Stok Kangri Summit Trek, reaching 6,114 metres – which is 219 metres HIGHER than Mount Kilimanjaro!…
Do you still want to hear from us? One of the biggest changes to UK data privacy law comes into effect on 25th May 2018. GDPR stands for General Data Protection Regulation. It’s the biggest change to UK data privacy law for 20 years and creates a single set of rules that better protects personal…
Caring Matters Now is partnering with CMN patient support groups across the world to raise global awareness of Congenital Melanocytic Naevus.
Huge thanks to Metro Safety for their generous donation and in raising awareness of CMN: Metro Safety’s 25th anniversary charity initiative raises £3,400 for Caring Matters Now In celebration of Metro Safety’s 25th anniversary year the company set themselves the challenge of raising £20,000, to be split between four worthwhile charities: Caring Matters Now MacMillan…
As part of my company’s 25th Anniversary year, we set ourselves a challenge of raising, £20,000 for 4 good causes. We work in safety, so we chose Children’s’ Burns Trust and Mesothelioma UK as our first two causes. I was lucky enough to put forward Caring Matters Now and have it accepted as the next…
In December 2014, one of our founding trustees Jessica Ma sadly lost her battle with cancer. Jessica was not only a trustee to the Caring Matters Now charity, but also an amazing, courageous and inspirational friend to many in the charity and beyond. Caring Matters Now established the Jessica Ma Award to publicly acknowledge and…
The exhibition is in full swing now! We have been overwhelmed with the big response from all those whom so kindly submitted their application to participate in this exciting project. Caring Matters Now charity is working in partnership with the world-renowned photographer Brock Elbank, who is best known for his recent series ‘Freckles’ which appeared in media…
Caring Matters Now is an ever-growing charity! Each year our membership list continually grows, research continually develops and opportunities to raise awareness of CMN continually increases. As long as there is a demand for support, research and awareness, Caring Matters Now will continue to do all we can to fulfil these three main aims. Since…
On the evening of the 7th July 2017, our beautiful daughter Sofia was born at Liverpool Women’s Hospital. I had an uneventful pregnancy and a straightforward birth and we were completely unaware that Sofia was going to born with a giant CMN. When she was born, the midwife explained that she had a birthmark. I…
2017 Jessica Ma Award Runner Up It was 8:30am when my phone rang while I was starting my day at work. “Can you get to Dover for 2am Saturday?” “As in tomorrow? No, I can’t get from Pitlochry in that time!”. “oh…. How about Sunday at 2am?” That was what started the journey that I…
We are delighted to offer you all an opportunity to get involved! We still need to raise a minimum of £100,00 a year to continue the support to all those affected by Congenital Melanocytic Naevi, to fund pioneering research at Great Ormond Street Hospital and The Institute of Child Health and to raise awareness of…
Wow, 20 years of Caring Matters Now, who’d have thought that the seeds sown all those years ago would have grown into such a strong and bene cial entity. Co-incidentally, it would have been our Holly’s 18th birthday this year so what a better way to celebrate than to join in with the CMN coffee…
The Yorkshire 3 Peak Challenge (Y3PC) began with an early 7am start on a cloudy Saturday morning on 20th May in the car park to the Golden Lion pub, Horton-in-Ribblesdale in the heart of the Yorkshire Dales. The Y3PC organisers had set up a registration tent in the car park and this is where I…
Our amazing team of 5 took on the challenge and well and truly nailed it! On Saturday 2nd September our CMN team met early at Langar Airfield, Nottingham to face the daughnting challenge of throwing themselves out of a plane! The weather as you will see from the video was fabulous and each of our…
The CMN trustees are very pleased to announce that Silicon Valley Community Foundation have granted $10,000 to further the work of Caring Matters Now. This wonderful grant will fund all our support events throughout the 2017-18 financial year. It is with thanks to one of our CMN members that we received this grant. Esther, who…
Caring Matters Now charity is working in partnership with the world-renowned photographer Brock Elbank, who is best known for his recent series ‘Freckles’ which appeared in media outlets worldwide. As part of the ‘Freckles’ series, Brock photographed a young lady from Barcelona who has CMN (Congenital Melanocytic Naevus)
To celebrate our charity’s 20th anniversary, we are holding a prestigious celebratory ball in Liverpool on the 3rd June. During the event, guests will have the opportunity to bid for some very special auction items with all profits going towards the CMN research. The GREAT news is, you and your friends can also bid on any…
Me and my friends, Alex Brown and Kacy Harrison took part in the tenner challenge because we were one of the selected 7 groups to participate. We were given £10 to start a small business, ours was selling cakes with cake toppers on them. We sold cakes every break and lunch for 4 weeks from…
Elijah’s Story by Hannah Cree Elijah was born on 2nd May 2014, after a healthy, normal pregnancy. We were “ready for this,” we’d planned Elijah, and we’d “had a baby already”- we were “going to really enjoy it this time!” Elijah was born with a 10/12 cm black mark on his scalp, and a deep…
Our Dearest Holly – by her Mum and Dad Holly was born 1st December 2011. She was our second child, a little sister to Callum who at the time was 18 months old. Holly didn’t have a straight forward delivery and she was three days old when we were informed of her exact condition before…
Hannah Bostock – by Mum Diane My daughter Hannah was born on the 26th January 2001 with multiple extensive CMN (Congenital Melanocytic Naevus) covering approx. 70 – 80% of her body with about 100 – 200 small naevi (satellites). Hannah was the most precious gift life could give to me. She was a wonderful baby…
Leah Wigmore – by Mum Lynne Our daughter Leah was born 16th June 2005, at Frimley Park Hospital and from the very first moment we laid eyes on her, we knew she was special. It looked as though she was born with a full head of hair, but it turned out to be a CMN,…
Jodi Ann Unsworth. Born at Liverpool Women’s Hospital, 6th September 1980. The grief began with the words …… “It’s a girl!”……… gasp ….. emergency ….. (we mustn’t let the mother see her child yet) ….. door flies open ….. in rush about 8 people ….. I just lie there numb ….. no emotions ….. no…
This is a great team building and social gathering for all those affected by CMN aged 11yrs – 17yrs. This event is open to teens with CMN aged 11 – 17yrs plus one accompanying adult, or friend if aged 17yrs. About: Join us for another fun, team building event at Go Ape Battersea. High Ropes,…
In December 2014 one of our founding trustees Jessica Ma lost her battle with cancer. Jessica was not only a trustee to the Caring Matters Now charity, but also an amazing, courageous and inspirational friend to many in the charity and beyond. Jessica was passionate about Caring Matters Now and the trustees feel her loss…
Facebook group for registered members of the Caring Matters Now Charity The charity’s primary aim for social media interaction is for Caring Matters Now members to receive up to date information about the charity, and to give a safe platform for Caring Matters Now members to interact with one another. Therefore, we have created a…
Buy your family & friends a gift this Christmas time, which will last a lifetime! Caring Matters Now has launched a Christmas Gift/Card campaign. You can make a lasting difference to the lives of those affected by CMN this Christmas time. Rather than spending your money on Christmas gifts or cards that don’t last,…
Hello my name is Ava and my brother Harrison has CMN. You may remember me as last year I did a sponsored silence and raised £170.20 for the charity, as I have been trying hard to be a CMN Champion. This year, my nan registered online to do the special CMN coffee morning on 24th…
Join in and help us to celebrate this momentous occasion. 2017 is going to be a huge year for Caring Matters Now……..We will be celebrating our 20th anniversary. Oh how things have come on in 20 years! At the age of 16 years old Jodi and her family were asked to provide support to other…
My sister and I decided to take on a 3 mile swim to raise awareness and funds for CMN and Caring Matters Now. We trained for around 3 months starting with a very basic 20-30 length swim and growing this weekly until we were doing one full length swim amongst shorter ones each week for…
I organized a charity night on Saturday 21st May at Dinnington Resource Centre. The evening included the absolutely fantastic singer, Dave Perkins performing some classic hits from The Rat Pack, Michael Bublé, Gary Barlow and Take That. He went down a storm! I showed a CMN video clip to represent exactly what Caring Matters Now…
In March 2016 Caring Matters Now hosted our first ever International Support Group Conference in London for all known CMN support groups across the world. 13 CMN support groups were represented from across 5 continents. During the 3-day conference our guests gained an insight into the work of Caring Matters Now by visiting the CMN…
Joanne and I attended the Annual Greater Manchester Police Federation Charity Dinner Dance last night. It was not our usual sort of Saturday Night but as you know we were invited this year as it was in aid of Caring Matters Now. The event was at the Mercure Manchester Piccadilly Hotel and those invited to…
Caring Matters Now has been asked to support a worldwide survey which will be focusing on the well-being of children and adolescents born with Congenital Melanocytic Nevus. The study is being conducted by a team at University Children’s Hospital Zurich, Switzerland, working in collaboration with Nevus Outreach and Naevus Global. This survey will provide important…
By setting up a regular monthly donation to Caring Matters Now today and you can help fund the CMN research and support those affected by CMN. A regular donation means you can give a small amount every month that makes a huge difference. Monthly donations by direct debit give us a predictable income so we…
I found out about Caring Matters Now after a friend got in touch having seen another person with birthmarks as noticeable as my own on a TV clip on the internet. I looked on the net and to my surprise there it was. I had only ever seen a newspaper cutting back when I was 16…
Fundraiser name: Dave Details of fundraising event: Georgia is just under two years old and was born with a large brown birthmark on her body, known as Congenital Melanocytic Naevus. It is similar to a mole but covers a much larger percentage of her body capacity and doctors say it can lead to complications such…
Please show Nathan your support in his challenge by donating to his Just Giving page. We would firstly like to say a massive thank you to everyone that registered their interest in running the 2016 London Marathon for Caring Matters Now. It is so good to know what some people really are prepared to put…
William Baird is a molecular genetics graduate who is starting work in Veronica Kinsler’s team today at the UCL Institute of Child Health. His 3 year PhD project is funded entirely by Caring Matters Now. William will be working on cells in the laboratory trying to correct the gene mutation that causes CMN. This is…
North West News attended the Liverpool Support Day in October to film what we do with our grant from Children in Need to support those with CMN. This is more positive awareness for our little know charity and Congenital Melanocytic Naevi. It was a great day full of fun, including cake decorating, mug making, ornament…
We are excited to announce that registration is now OPEN for the Nightrider Challenge 2016! We have 20 charity places for the 3 events in London, Liverpool & Bristol. Please click here for more information.
Caring Matters Now trustees have invited various CMN patient support group leaders from around the world to come together and strengthen the relations we have already established with one another. The aim of the weekend is to give our guests an insight into the work of Caring Matters Now, including an insight into Dr Kinsler’s…
This has been the third year of entering Tough Mudder. However, I challenged myself to two in September; ‘Tough Mudder North West’ on the 12th Sept and the second ‘Tough Mudder London South’ on 27th Sept. The event is a 12 mile obstacle assault course which tests your physical and emotional strengths over a series…
We recently received the wonderful news that Caring Matters Now would be a Sporting Bears Motor Club benefiting charity in 2015. Thanks to The Ranchhod family who have a son with CMN and John Redshaw from the “Midland Bears” for the nomination, we will be receiving support from the Sporting Bears Motor Club “Dream Rides”…
The Organization Committee of the SPINOZA CHAIR, set up by the Amsterdam University Association on behalf of the Faculty of Medicine of the University of Amsterdam, has awarded the SPINOZA CHAIR for 2015 to Dr Veronica Kinsler (MD, PhD, MRCPCH) from October 26 until October 29, 2015. The chair was established in 1995 by the…
The CMN trustees were amazed by the amount of designs submitted for our Christmas Card Competition. It was such a hard task selecting the 8 winning designs! After much deliberation, the following designs were selected to be included in our CMN Christmas Card Packs 2015. Congratulations to all our winners! You can now purchase your…
When Yasmin started nursery at age 3 in 2013, I provided her Key worker with the information booklet I had downloaded from the Caring Matters Now website. I spoke about things that they should look out for, how they could support her and the complications that could arise as a result of CMN. Her teacher…
UPDATE – Our 3 CMN Dads did it!!!!! So, on the 20th September 2015, three incredible dads of children with CMN, reached the summit after a gruelling 9 days of trekking and a final 8 hours of glacier climb with crampons & ropes. These guys are incredible! This was a gruelling challenge, mentally and physically…
As this was our 2nd Coffee and Cake event, we were slightly more organized! We gathered a small team of family and friends to help out on the day with tombola, raffle, puppet show and bouncy castle, as well as a fun disco and face painting donated by Starz Party. We used our local church,…
On June 6th 2015 with the help of family & friends, we decided to organise our 2nd Fundraising fun day. We had such a brilliant time last year we received such amazing support and raised a fantastic £1700. We also managed to raise awareness through local media by having the support of Nottingham Evening Post…
‘Oh what a lovely day, the day we went to Bridlington’ …and so it turned out to be! The families came, the food was eaten, the sand sparkled, the sea was freezing but best of all the sun came out. All week the Gollop family watched the weather forecast. A Beach Day in the rain…
We were very lucky with the weather, it was a real scorcher all morning. We met at a lovely cafe next to a park with a paddling pool right on the beach in Brighton. We were a total of 5 families, with families coming to join us throughout the morning. The children had huge milkshakes…
On 6th June 2015, 8 families from all over Ireland attended the second Dublin regional gathering, organised by Caring Matters Now. For some families it was a chance to catch up again and for others it was their first time attending such an event and they were keen to chat to other families affected by…
By Ginny Sometimes when I read the CMN newsletter I am left feeling heartbroken at what some families have had to endure with their children who have been born with CMN. Part of me is very glad I was so ignorant of this condition when my daughter was born because for us it has been…
Our family were all away the weekend that Caring Matters Now had their official coffee morning, so we did ours a bit late! As a family we’ve been keen to raise more funds and more awareness, and as we enjoy opening our home up for friends and family we thought a coffee morning was the…
January 2013 was the month my husband Gareth and I found out we were going to be having another baby, overjoyed but nervous we kept this to ourselves for the first few months until the first scan, I remember driving to the hospital trying to prepare myself for this appointment (having had a few disappointing…
There were thirteen of us who met at Woodlands park on a Saturday morning in June. That’s 3 families. We all got on straight away and I couldn’t wait to go on the water slide, Viking ship and toboggan run with everyone. I could see that everybody was having a good time. We all want…
Christmas Card Competition 2015 Calling all budding artists… Caring Matters Now would like to invite children aged between 4yrs – 17yrs to design a Christmas card, which could become one of the official CMN Christmas Cards for 2015! Four designs will be chosen by the CMN trustees and produced into this year’s charity Christmas cards. …
To Caring Matters Now My name is Ava, I’m 10 years old. My friend Megan and I did a sponsored silence to raise money for you. The reason we did this was because my brother, Harrison is affected by Congenital Melanocytic Nevi. We managed to raise £170.20 by doing the sponsored silence from midnight until…
In December 2014 one of our founding trustees Jessica Ma lost her battle with cancer. Jessica was not only a trustee to the Caring Matters Now charity, but also an amazing, courageous and inspirational friend to many in the charity and beyond. Due to Jessica’s wise and tireless work in managing the charity’s finances over…
We are absolutely delighted to announce that Dr Veronica Kinsler has won the coveted Great Ormond Street Hospital 2015 Child and Family Award. This award is given for a very special individual or team nominated by a patient, parent or carer, who is a great team member and is always welcoming, helpful and expert. There…
The Belfast City Marathon is Northern Ireland’s largest sporting event with 17,500 people taking part every year. The race day includes a fun run a full marathon, an 8 mile walk and a wheel chair race, but it was the relay event that caught our attention. Over the years myself, Adam and many of our…
My granddaughter Lois who is 5 years old was born with CMN so we have a very personal reason to raise money for the charity. On Saturday 18th April we held a charity night for CMN in Gilroyd social club. This is our third event of this type. We previously raised over £2500 with the…
Dronfield is the small town where we grew up and they have held a 10k for the past 22 years! This year myself and Alex decided to challenge ourselves to run the tough 6.2mile route for Caring Matters Now. We both completed the course in exactly the same time of 1:03:56. Alex ran the course…
On the 25th June 2012, our son Ethan was born and it was one of the happiest days our lives. Ethan was born with what only could be described as a birthmark/mole, which covered about 35% of his body, including the side of his face, his neck and shoulders. When Ethan was born at York…
2014 has been an epic year for fundraising and we would like to say a massive thank you to you all for doing your bit! But we must not rest on our laurels! We have seen an increase in corporate support, schools fundraising and so many more individuals getting involved in one way or another.…
Recruitment for this post will commence shortly and we hope to have news of the newly appointed member of the CMN Research team in the July newsletter. This has been achieved through many different activities such as the CMN Dinner Dance, a very successful marathon run which raised over £10,000 and all of you taking…
I first took up running 5 years ago at the age of 55. I was watching the Great north run on TV and thought I would have a go, so sent off an application and a few months later I had an acceptance! So, thought I best start training having never run 100 yards since…
On 7th September 2014 Amy organised a Big Charity Family Fun Day in Sheffield. At the Charity Fun Day there was bouncy castles, face painting, balloons, fairground rides, stalls, Olaf, Minion and Doc McStuffin mascots, not to mention a BBQ, Bar and Zumba! The Big Charity Family Fun Day raised a grand total of £541.33!
“CMN is obviously a very special charity to me and I got together with my friend, Sam who also is a keen fundraiser for The UK Sepsis Trust and CLAPA charities (These two charities mean a lot to her as she nearly lost her life to Sepsis and her eldest daughter was born with a…
What an amazing night had by all that attended the first ever CMN Charity Dinner Dance on 20th September 2014 at the prestigious Intercontinental Hotel on Park Lane, London. The support we received from small corporates for this event was remarkable and the event could not have happened without such generosity. The very talented YPL…
This month we have launched our fundraising campaign of raising £50,000 for the CMN research. We are committed to supporting Dr Kinsler’s research at Great Ormond Street Hospital. Dr Kinsler has spoken to the CMN trustees about the possibility of funding a CMN Fellowship at Great Ormond Street Hospital. This means, Dr Kinsler will have…
Little Acorns Charity Fun Day – Saturday 26 July 2014 The Little Acorns Charity Fun Day is held every year and is a chance for children, parents and friends to come along and have a great day out. With lots of faces being painted, arms sparkling with glitter tattoos, children bouncing on the castle, taking…
By Juan Galbete Luz Nery landed in London on the 8th of July 2014 with a feeling of uncertainty. Coming from a small coastal town in Colombia, Luz travelled to London with her son Didier, who has CMN. Didier was successfully operated on in 2012 in Bogotá, Colombia. It was an operation which required the…
On the 8th July, we had a very special little boy come and visit us here in the UK from Columbia. Didier, who featured in the channel 4 ‘Turtle Boy’ documentary in 2011, captured the hearts of all who watched how he struggled living with his Congenital Melanocytic Neavus covering the majority of his body…
When I set out to raise a few pounds for Caring Matters Now with a cycling holiday in the Alps, I didn’t know what to expect. Yes, I knew it would be very hard and yes, I knew that the climbing would be long and sustained, but I hadn’t realised how spectacular the alpine scenery…
We are extremely excited to announce that a very special little boy is coming to visit us here in the UK! On the 6th July, Didier and his mum are travelling to the UK and spending a week in London. Didier became a very much-loved little boy across the UK, after the documentary ‘Turtle Boy’…
Why I took part in the ‘Caring Matters Now Coffee & Cake Morning’ By Tanith When my daughter Isabelle was born in 2009, she had a large brown birthmark on her leg. The doctor came to see us the following day and explained that it would have to be removed due to the increased risk…
On 1st August 2012 at 1.28am our beautiful little daughter Éirinn entered the world in somewhat dramatic fashion. Looking back, I can honestly say that this was a blessing in disguise…after a 21 hour labour, Éirinn was placed on my chest and I noticed a little mark on her left ankle. She didn’t make a…
Each year we ask the parents if they wold like to donate towards a charity chosen by the school. A collection is then made at the end of the two performances of the infants nativity play. This was made in support of the Lacy Family whose daughter Charlotte has CMN. Many thanks to all the…
Cori aged 10 had the idea for everyone to make a donation to have a guess on the gender and weight of his mums bump. He managed to raise £300 in donations when his baby sister was born and was able to raise awareness about CMN. He also put a donation box and leaflets around…
Lily-Mai (Year 2) would like to thank all the children, parents and staff of St Marys School, Shackleford who contributed generously in the recent “small change amnesty” organised by Lily-Mai who has CMN. In total, the contributions amounted to a total of £32.08 which is fantastic. Combined with other collections from family, friends and colleagues…
I work for DWP in a large office in the city centre of Norwich. I am part of a small group called Kulture klub, who organise monthly events for the office that has a work force of approx 250. Every month we have a different charity or cause that have been chosen or suggested by…
We held an online auction to sell a signed and framed Sheffield FC first team football shirt that had been signed by England international Chelsea footballer, Gary Cahill. Sheffield FC, founded in 1857, is the World’s oldest football club and is accredited as such by FIFA. Sheffield plays its home games at the Coach and…
The event I organised was a ‘Guess the name of the Teddy’ competition which I held in school for one week at lunch time. People who entered my competition picked a name from a long list and one winning name was drawn by a teacher at the end of the week. I did the competition…
Every year, the school Phoebe attends holds a Speech Competition. The kids have to talk for a maximum of 3 minutes on a topic of their choosing. Phoebe decided it should be about her and her birthmarks. The teacher and the kids – all of whom have never asked Phoebe about her marks because she…
It is with great excitement to announce that Caring Matters Now has been granted £4,000 from Genetic Disorder UK. This grant is to cover the costs of the CMN Activity Weekend 2014. The funds will pay for all our children and adult with CMN to attend the weekend free of charge. The CMN trustees are…
The CMN team took on the skydiving challenge on Saturday 22nd March 2014. The team of 18 met early Saturday morning at Langar Airfield, Nottingham to face their fears! Team members had travelled from all corners of the UK, from as far up as the Highlands, to as low down as Kent! The weather conditions…
Hi, I’m Amanda and I was born on October 12th 1967 and one of identical twins. A few hours after my birth my parents were told that I had been born with what they called a ‘Swimsuit Naevi’. It covered my back, round my tummy, buttocks and half the tops of both legs. Also, large…
The CMN trustees are very pleased to announce that Children in Need have granted £10,000 towards the work of Caring Matters Now. This is AMAZING news as the grant will increase the profile of our charity, as well as funding our work! The grant will fund all our support days in 2014. We are so…
It is with great sadness that we share the news of Holly McCrossan. On Friday 21st February 2014, Holly (aged 2) passed away after suffering with CMN syndrome. Holly’s parents are overwhelmed from the love and support expressed by you all and they would like to thank everyone who has shown them so much care…
Ava’s Story told by Emma Two years earlier, 2008, I gave birth to my first child, Isaac, which was rather traumatic due to me having a retained placenta so I was apprehensive about giving birth again. However, I was really looking forward to that overwhelming emotion I felt instantly after giving birth to Isaac and…
Exciting Developments for our CMN adult members This year is a big year for our adult support developments and we are excited to share with you all a little bit about the history of the charity and the plans we have with regards to adult support. As an adult with CMN, I do understand the…
Cake Bake Sale (All Years) and Business Enterprise Event (Year 6). On 6th December 2013, Blackheath High School (Juniors) held a Cake Bake sale for all years and year 6 were divided into groups and each group was given £10 for materials. From the materials they bought, they made keyrings, jewellry and note books to…
The whole school community of St. Mary’s. The children are aged 4-11 years. St. Mary’s P. S. Draperstown raise money with a Christmas Charity Appeal every year, during the month of December. We like to select a charity that is local or one that has close connections with a member of our school community. This…
I ran a cake stall at my school for CMN. Some of my friends helped me. I had to make loads of cakes to go round the school so everyone would be able to buy one. I raised £130 for CMN. I also spent the end of the summer term making friendship bracelets. When I…
Thank you to Cross Country for raising £1000 towards the work of CMN! Cross Country were introduced to Caring Matters Now by Malcolm, whose daughter has CMN. They raised the £1,000 by dress down Friday, a giant money raffle and selling homemade smoothies to staff. A massive thank you to everyone who dug deep and…
My name is David and I am 41 years of age. Until recently I thought I was the only person to have a CMN and I probably would of until now if it wasn’t for my mum phoning me and telling me she had just watched This Morning and seen a young girl on the…
We are delighted to announce that Lincoln City Football Club Youth Academy have chosen CMN to be their charity partner. Speaking on hearing the result, Jodi Whitehouse, our Chief Executive, said: “We at Caring Matters Now are absolutely delighted to have won this vote and very much look forward to working in partnership with Lincoln…
Hi, my name is Frances and I am a 19 year old female singer/songwriter from Yorkshire & here is my CMN story. For the beginning of my life I can’t really remember too much, so I asked my mum to write her version of events of my upbringing and the struggles she had to face…
Finlay and his cousin Dexter ran the Sheffield 1.5km Mini Great Yorkshire Run. ‘We did it because we love Max’. Max is Finlay’s little brother who has CMN. ‘We wanted to raise some pennies and awareness for Caring Matters Now because Max has CMN. We ran the whole way round with our dads and raised…
Callum has a bathing trunk naevi, so we decided to raise funds for Caring Matters Now. We contacted our local Tesco store who allocated us a slot to collect. Armed with the leaflets and balloons, myself and Callum sat in the foyer of Tesco with our collection buckets. We told people about the condition and…
Crabtree & Evelyn Wimbledon Centre Court Shopping Centre In Store Charity Event – 24th September I heard about it from a support group called Caring Matters Now that I am associated with due to our son being born with a rare condition Congenital Melanocytic Neavus which has recently been discovered to be a syndrome. Caring…
I got together with some of my school friends and told them about CMN. So we all decided what to do to fundraise and we decided on a cake stall! We spoke with the head teacher and he was happy with it. We made letters and posters for every class and I told my friends…
I went with mum and dad, some of the mums from school, my friends from school, my uncle and my big cousin Jordan to Cambridge United Football Club and we collected money in buckets for the charity. It was very cold and hard work but we raised £204.70. We also got to watch some of…
At the beginning of January we wrote to various organisations and local attractions to see if they would donate prizes for a raffle. We had an amazing response with 19 prizes being donated in total. We sold tickets to friends, family and my mums work friends and sold pink and blue cupcakes on the day…
Dr Kinsler’s CMN research work has recently been awarded one of five prestigious equal poster prizes at the Academy of Medical Sciences meeting for Clinician Scientists 2013, which is a national meeting of clinical researchers. This was awarded for the recent NRAS findings which you can read more about here. Caring Matters Now is a…
There has been a very exciting new finding in our study of the genetics of congenital melanocytic naevi (CMN). We have discovered that the genetic change (called a mutation) that causes CMN and neurocutaneous melanosis is in a gene called NRAS. We found this gene mutation in 80% of the cases we…
By Louise (mother of Charlotte, age 2 yrs) As fliers were distributed to family, friends, neighbours and school book bags, I began to worry my love of quiz nights was not shared by the masses. But during the weeks that followed, there was a steady stream of requests for tickets and more often than not,…
Birth Wes and I had only been married for 9 months when we found out I was pregnant. We were overjoyed at the thought of having a little one, it was like the icing on the cake. Anna-Grace made her appearance a week early. When Anna was born the midwife’s wrapped her in a towel and…
Check out the documentary on Dider, a small boy with extensive CMN. It features a Caring Matters Now Family Day and many of our CMN kids as well as Dr Kinsler and Mr Bulstrode from Great Ormond Street Hospital.
To all the great team at Caring Matters Now, Well as you can see from the photos we finally did it, Harvey’s hair has been cut short. It’s something we always said we would do just before he started school. May 25th was quite an emotional day for us as a family as Harvey has…
As a result of Jodi coming into the exciting post of Chief Executive for Caring Matters Now Support Group, she is now unable to continue being Chair of Trustees, which is the position Jodi has fulfilled since the support group was established. As I’m sure you are aware, the Chair of Trustees has the responsibility…
As you are probably already aware, Jodi Unsworth is the original founder of Caring Matters Now back in 1996. Jodi, who was only 15 at the time and her parent’s took on the role of supporting other families affected by CMN. Since then the support group has developed immensely and today has over 350 families…
As Caring Matters Now continues to grow from strength to strength, it is vital that we have a strong team of trustees who are dedicated to developing the charity, enabling our members to receive the best possible support. It gives me great pleasure to introduce our most recent trustee to join the team, Andy Selwood.…
Yes, you read the title correctly… Caring Matters Now is planning to conquer 7 challenges on 7 continents! Since 2011 we have been conquering 7 challenges on 7 continents and here is what we have achieved to date… AFRICA – 2011 Mount Kilimanjaro Summit Total raised: £74,342 Read more about this challenge here EUROPE –…
Great Ormond Street Hospital Children’s Charity Blog have recently published a post on their website entitled ‘Speaking to the experts on congenital melanocytic nevus‘. You can read the post by CLICKING HERE.
Research carried out at Great Ormond Street Hospital and the UCL Institute of Child Health has identified that the gene causing red hair – melanocortin-1-receptor (MC1R) – is more common in children with Congenital Melanocytic Naevi (CMN), a rare form of birthmark. CMN are rare brown or black birthmarks which cover up to 80% of…
I am VERY pleased to announce that Mount Kilimanjaro is done and dusted! How amazing the experience was! It is very difficult to summarize this incredible journey, so instead I have decided to include the daily blog updates in the newsletter, along with some photographs. I do hope you enjoy reading all about our adventure!…
My name is Zelma, I am from South Africa, and this is my personal story. I remember the overwhelming joy my husband and I felt when I found out that I was pregnant. We were married only for 3 months, but we could not wait to start a family. I had a pretty normal pregnancy,…
A sponsored Silence £1000 raised for CMN – by NOT speaking for 24 hours This challenge may sound easy for many, how difficult can it be? But for an experienced sales person not speaking is like asking an accountant to not use a spreadsheet or painter not to use a brush. Paul loves his Rugby…
Maja is two years old and wonderfully enthusiastic about life. She was so keen to come into this world that when it was time to be born (on a frosty December night) she allowed mum and dad a full 45 minutes to get dressed, arrange childcare for her sister, drive to hospital, get admitted to…
Well, you have all been actively fundraising for Caring Matters Now and we would like to say well done and… Thank you, it means so much Here is just a selection of the activities that have been taking place! Tricia (Grandma to Fay) and the staff at Barclays Bank, Cambridge held a fundraising raffle and…
Dr Kinsler will be speaking at the 2011 European CMN Conference to be held in Tübingen, Germany on 6th and 7th May 2011. She will be accompanied by many International Specialists who are focussed on Congential Melanocytic Naevi and Neurocutaneous Melanocytosis. Such collaboration of expertise will hopefully increase the understanding of this rare and potentially…
We are very pleased to announce that Caring Matters Now has been awarded a £4,000 grant from Jeans for Genes — a national children’s charity which raises money for the care of children with genetic disorders. In return for the grant, we need to raise awareness about Jeans for Genes Day and motivate the public…
Over the past 12 months Caring Matters Now has been developing contact with Nevus Outreach, which is a US based support group for CMN. In November 2009 Mark Beckwith, the Executive Director of Nevus Outreach, attended our CMN Liverpool family day. He was so enthused having met our families and seen what our support group…
I am an older mother; Eva was born when Colin and I were in our forties. She was the little girl we had waited for, for so long! I went into hospital on the eve of my birthday. The labour was long but little did I know that this procedure would go on through the…
My name’s Eva and I am 13 years old. I was born on the 14th May 2003, which is actually my mum’s birthday! My hobbies include; running, cycling, swimming, art, singing, drama, dance and guitar. I want to be an actress, singer and dancer when I am older but I would also like to be…
How we raise our money The short answer is – we rely on you! Last year, we were really worried that Dr. Kinsler’s research would stop due to lack of funds. We asked everyone to pitch in and you did! As a result, we had our best fundraising year yet. Over £44,000 was raised. Later…
I had a very good and healthy pregnancy and I was a little upset at the thought of losing my bump but at the same time extremely excited about meeting our new arrival. I was four days overdue and with my blood pressure rising the decision was made to induce labour, so on Sunday 13th…
Jodi Unsworth Well, as you may have already seen the Caring Matters Now Support Group has developed immensely over the past 2 years, thanks to all the hard work and commitment of the volunteer Trustees, support contacts and the CMN members. The fundraising efforts of all the CMN families has been tremendous and as a…
Hi, my name is Barry, father of Shelley. Shelley is a twin. She and her brother Mark were born on the 30th June 1974 at the Queen Victoria Hospital, South Africa. Although it is 35 years ago, I vividly remember my wife Marion and myself driving down to the Hospital at 5.30am on a Sunday…
My name is Georgia-Louise and for 9 ½ years now I have grown up with a younger brother who has a CMN, his is situated mostly on his back. During that time we have had a few ups and downs like most kids but generally I have put up with him. As he has grown…
We first heard about Caring Matters Now through the interview that Jodie Unsworth & Dr. Kinsler did on This Morning and since watching the program we have been in contact with the charity & they have really helped us by showing us that we are not the only ones in a sometimes difficult situation. It…
Hi to you all, I am Amy’s Granny Sue and chair of our local University of the Third Age here in Bridlington. Our U3A band, the U3Mix, with the help of a local pub, organised a Party Night for Amy to raise funds for CMN. Quite by chance we learned that the grandson of the…
In a mad moment Susanna and Clare have decided to make a difference by completing 10 runs and raising £10,000 for Caring Matters Now over a 12 month period – starting June 6th 2009 with a 5k race. The girls thought they should start off gently! As well as the running they are having fun…
On Saturday 19th July, Amy Gollop, along with her mum and dad, arranged a tea party to help raise funds for the Caring Matters Now Support Group. Amy sold tickets to family and friends for £2. Amy sold cakes along with various crafts and art-work designed by Amy’s aunt and friend which were also available…
My name is Katy, and I am 11, nearly 12, years old. I have a CMN on the back of my right knee. When I was 18 months old, I had an operation to remove it. It was lasered off, using CO2 and Ruby Lasers, and then I had various bandages and dressings for 3…
Dr. Kinsler has been awarded a grant by the Wellcome Trust to fund research into CMNs until August 2012. The Wellcome trust is a UK charity organization that funds innovative biomedical research to support the brightest scientists with the best ideas. The grants awarded are hotly contested with many more applicants than grants given out.…
As part of the national coffee morning for Caring Matters Now I decided to hold my own coffee morning at home and invite a few friends!! Well, the numbers increased to over 30 and my house was bursting at the seams with friends, family and neighbours all wanting to give their support to a charity…
On Saturday 11th April 2009, Rachel Ilhan raised over £500 for the CMN research by walking 5 miles along the English coast. Rachel is 11 years old and has CMN covering her back and stomach. Rachel’s mum, Wendy, said “Rachel is a happy, confident, outgoing 11 year old who just happens to have CMN.”. When…
Caring Matters Now has been selected as recipient of a £4,000 grant from Jeans for Genes — a national children’s charity which raises money for the care of children with genetic disorders. Every half an hour a baby is born in the UK with a genetic birth defect or genetic disorder which could seriously affect…
Even amongst health professionals, awareness of CMN is low because it is a rare condition, so our first challenge as parents was to find information about the condition and what treatments were available. Fortunately, we discovered the Caring Matters Now website and were directed to the centre of expertise at Great Ormond Street Hospital led…
I was 6 years old and sitting in the bath playing with small toys, when I looked down at my skin and stared at the big brown, hairy, lumpy birthmark that covered all my back, wrapped around onto my tummy and continued down past my bottom onto the top of my thigh. As I stared…
I was aware that the midwives were not handing her to me right away. The midwife mentioned the baby was a bit slow to cry so she was going to administer some facial oxygen and did so. Then I heard the baby cry but they still did not bring her to me. The two midwives…
Hello, my name is Lynne, I have a son called Rhys, and he is 10yrs old and has CMN. Until 6 weeks ago we had never met anyone else with this condition. We met Jodi Unsworth in Liverpool, and many other lovely people who had children with this condition; we also met the children, which…
My daughter Scarlett was born nearly two years ago with a very rare skin condition called Congenital Melanocytic Naevus (CMN). No one in Cheltenham hospital had ever seen the condition and therefore were unsure where to send Scarlett, as she was not actually ill. To cut a long story short eventually we got to Great…
