Rare Disease Day - 28th February 2015

Latest News

An interview with Luz Nery (Didier’s mum)

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 […]

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A special week for Didier and his mum!

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 […]

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Didier’s visit to the UK

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’ […]

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Why I took part in the ‘Caring Matters Now Coffee & Cake Morning’

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 […]

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Phoebe raises awareness of CMN in a big way!

Phoebe raises awareness of CMN in a big way!

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 […]

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Genetic Disorder UK Grant

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 […]

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THEY DID IT!

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 […]

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Caring Matters Now receive £10,000 from Children in Need!

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 […]

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Holly McCrossan

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 […]

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News for CMN Adults

News for CMN Adults

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 […]

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Lincoln FC Youth Academy Announces CMN as Charity Partner

Lincoln FC Youth Academy Announces CMN as Charity Partner

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 […]

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Crabtree & Evelyn Wimbledon Charity Event

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 […]

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Prestigious Poster Prize for NRAS Finding

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 […]

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Exciting new finding in our study of the genetics of CMN

Exciting new finding in our study of the genetics of CMN

      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 […]

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Channel 4 Documentary – ‘Turtle boy’

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.

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New Chair of Trustees

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 […]

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Exciting Developments at CMN!

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 […]

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Warm Welcome to our new CMN Trustee – Andy Selwood

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. […]

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7 Challenges On 7 Continents

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 – […]

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Speaking to the experts on Congenital Melanocytic Nevus

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.

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