Caring Matters Now Annual Report 2013 14

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Annual Report! 2013-14

Content Introduction page 3 What is CMN Page 4 Financial overview Page 6 Support Page 8 Research Page 10 Awareness page 12 Future page 14

Introduction Since Caring Ma,ers Now became a registered charity in 2006, the charity has grown from strength to strength.

Our priori@es remain the same in suppor@ng those affected by Congenital Melanocy@c Naevi (CMN), raising funds for CMN research and raising awareness of CMN.

During this financial year (2013-­‐14), all three aims have been achieved and this is due to the amazing support we have received from all our Caring Ma,ers Now members.

This year, Caring Ma,ers Now has been the growth in raising awareness both na@onally and interna@onally. Na@onally, we have been working more closely with the Bri@sh Associa@on of Dermatologists, Rare Diseases UK and Gene@c Alliance UK. Interna@onally, Caring Ma,ers Now has played an integral role in developing a global network for all CMN support groups across the world. At present there are 12 countries represented within the global network, which has been named Naevus Global. Through our network, the 12 representa@ve support groups can help one another and share advice about developing be,er support strategies. Also this year, the Caring Ma,ers Now trustees have seen a growth in financial support from our members and supporters, with £76,000 being donated towards the work of the charity and the pioneering research. This is a phenomenal amount of funds raised for a charity of our size. It is with thanks to all our members and supporters for con@nuing to give so generously towards our work and helping us to achieve our aims and fulfil the needs of everyone affected by CMN. My hearXelt thanks goes to all those who have donated money and @me to Caring Ma,ers Now. Whether you have climbed mountains, run races, baked cakes, sold raffle @ckets, or given a monthly dona@on, the trustees and I are extremely grateful. Without the support from you all, Caring Ma,ers Now would not be able to func@on. it really is a privilege to share our annual report with you, so you can see the difference you are making to the lives of those affected by Congenital Melanocy@c Naevi.

Jodi Whitehouse – Chief Execu@ve Officer

Annual Report 2013-14

What is Congenital Melanocytic Naevi?

Congenital Melanocy@c Naevi (CMN) are brown or black moles present at birth, covering up to 80% of the body. Large or mul@ple CMN are mostly untreatable and carry an increased risk of malignant melanoma, the most dangerous form of skin cancer. CMN syndrome is the associa@on of these moles with brain and spinal problems, such as tumours, fluid on the brain, fits and developmental problems, and/or characteris@c facial features.

The brown or black moles can be very large, covering up to 80% of the body, and very numerous – up to hundreds in one individual. They are oeen hairy and the texture tends to be soeer, looser and more wrinkled than normal skin tearing easily if trauma@sed. Large or mul@ple CMN are untreatable. Due to the appearance of CMN it causes a great deal of anxiety and stress to those affected and oeen creates the feeling of isola@on. This is why support is of paramount importance.

Annual Report 2013-14

What is Congenital Melanocytic Naevi? Early in 2013 we found that CMN is caused by a muta@on in the gene NRAS that occurs when the baby is developing in the womb. During development in the womb the muta@on changes how those cells are supposed to develop, leading to the birthmarks and/or the brain changes. These changes are permanent. Aeer the baby is born the muta@on is s@ll present in the cells, and it is this that increases the chance of developing melanoma. Melanoma in this condi@on is at highest risk during childhood. Although melanoma is always an aggressive tumour, in children with CMN it is par@cularly aggressive and resistant to treatments. All cases of melanoma in CMN which have been seen at Great Ormond Street Hospital in the last 15 years have been fatal.

Financial Overview

Annual Report 2013-14

Caring Ma,ers Now is funded en@rely by dona@ons from individuals, groups and some grant giving trusts. The charity receives no Government funding. The financial year is from 1st April 2013 to 31st March 2014. Caring Ma,ers Now achieved £76K in dona@ons in 2013. The majority (£48K) came from individuals. Other key events were the Sky Sports Dancing with the Stars, the 24 Peaks in 24 Hours challenge and the CMN Champions campaign, which encouraged corporate support and school support.

FY 2013 Dona,ons -­‐ £76,000 6108

Indiviiduals 10000 2500 11481.97

24 Peaks Challenge

Sky Sports dancing with the 8,982 starts Sky Dive


All other (companies/school events)

Financial Overview

Annual Report 2013-14 Investment of funds In 2013, Caring Ma,ers Now donated £26K towards the CMN research at GOSH while £29K was spent on support campaigns, including the Support Days, Ac@vity Weekend, Newsle,ers and Support Packs.

Our accumulated dona@ons to research since Caring Ma,ers Now was registered as a charity in 2007 has now reached £124,000.

FY 2013 -­‐ Outgoing Funds



Research Support Campaigns

Annual Report 2013-14 Our priority as a charity is to first and foremost offer the best support to those affected by CMN syndrome and their families. This is the primary aim of Caring Ma,ers Now. Our further two aims for the charity (research and awareness) flow from the support we offer to all our members. We


want to ensure that all members are supported in the here and now.

Caring Ma,ers Now support days New members

Chat & Play Days

This year we held our first ever regional Chat & Play Day. Our dedicated CMN regional support contacts organise small gatherings within their region for CMN members to develop friendships and share experiences. Our first Chat & Play Day was held in Bristol. We plan to organise more of these days next year.

As a result of the working p a r t n e r s h i p b e t w e e n G r e a t Ormond Street Hospital and Caring Ma,ers Now, we are seeing an increase in referrals. Due to CMN awareness being raised by both Dr Kinsler and Caring Ma,ers Now we are reaching those affected by CMN at an earlier age. This year, 30 new CMN members have joined us this year, of which 14 were under the age of 1 year, 2 interna@onal members, 11 referrals from GOSH, 5 referrals from social media sites & 8 from Google search.

Support days are held every year in various loca@ons across the UK. This year, we held our support days in London, Glasgow and Liverpool. Our support days were kindly funded by Kinglsey Napley law firm. Each day was very well a,ended by our members, with on average 100 -­‐ 150 a,endees. Dr Kinsler a,ended each support day and was able to give an update on her CMN syndrome research. She also spent @me with individual families and was able to give advice and support to those who needed it. Our regional support contacts were also in a,endance, developing friendships with our members.

Annual Report 2013-14 Regional Support Contacts

Caring Ma,ers Now has regional support contacts situated across the UK. All our support contacts are either adults with CMN or parents of children with CMN. Our regional support contacts are at hand to give one-­‐to-­‐one support to members living in close proximity to themselves. This year, we have been working on increasing our number of regional support contacts from 11 to 12. The charity is keen to develop support in Ireland over the next 12 months.

Support Exci@ng developments for our CMN Adult Members

This year we have been developing our adult support. An on-­‐ line adult community forum has been developed and we held our first CMN adult-­‐only support gathering. The gathering was held in London with 6 CMN adults a,ending. We received good feedback from our first adult event and we plan to hold another support gathering next year.

“ Thanks again for a wonderful weekend. Josh was feeling very shy and out of his depth prior, but this weekend had brought him out of himself and he is much more confident with school etc. I believe that the acCvity weekend does more than meets the eye“

Support Literature

This year, we have started a ‘Young Ones’ newsle,er which is sent out with our standard newsle,er. This is wri,en by our teenage support contact and is an appropriate read for our younger members.

Caring Ma,ers Now Ac@vity Weekend

Our Caring Ma,ers Now Ac@vity Weekend took place at PGL in Noongham. 19 families a,ended the weekend and it was a really special @me for the children, as well as the adults. Caring Ma,ers Now funded the cost of all the children and adults with CMN who a,ended the weekend.


Annual Report 2013-14 CMN research making excellent progress

The research has con@nued to make excellent progress this year thanks to the funding of consumable costs for the CMN projects by Caring Ma,ers Now. Caring Ma,ers Now members have con@nued to join the research projects in good numbers. The year has culminated in the successful applica@on to the Wellcome Trust for an Intermediate Clinical Fellowship grant total value £827,000, to be used over 48 months from 1st February 2015-­‐31st January 2018.

UK research into CMN takes place at Great Ormond Street Hospital (GOSH) and the next-­‐door UCL Ins@tute of Child Health (ICH). The CMN research is led by Dr. Veronica Kinsler who works in both ins@tu@ons. In recent years we have been able to start to understand what causes CMN syndrome and why it appears in par@cular people. Gene@cs of CMN

This project produced a big find this year with the discovery of a new gene in about 15% of CMN families which seems to make CMN more likely to occur in those families (rather than being directly responsible for the CMN itself). Having found this gene in CMN families we looked in adult people with melanoma (but no CMN) and found that the gene is also present in some of their families where the melanoma occurs at an early age. This shows the power of rare diseases in inves@ga@ng more common condi@ons, and it was on the basis of this finding (plus the research output over the last couple of years) that won the Wellcome Trust grant.

Annual Report 2013-14


Dr Kinsler’s NRAS research work was awarded 2 na@onal prizes during 2013. The first was a poster prize at the Academy of Medical Science, and the second was the CAD Trophy from the Bri@sh Associa@on of Dermatologists. CMN neurological study

Caring Ma,ers Now funding research staff

This year, Caring Ma,ers Now has funded a research assistant to work alongside Dr Kinsler, an administrator to support Dr Kinsler and also part-­‐ funded Dr Regula Waelchli who undertook the Neurological study for Dr Kinsler.

This study was run with Dr Regula Waelchli who worked under Dr Kinsler for one year 2013. She collected together all the neuro data we have been collec@ng in our database for the last 20 years, and we analysed this data to see if we could decide which MRI scan findings were associated with a good outcome or a bad outcome. This was a very successful study and it is due to be submi,ed for publica@on to the Bri@sh Journal of Dermatology in the next few weeks. It will have real prac@cal implica@ons for CMN pa@ents in the UK and abroad, as it clearly shows the value of MRI scanning in infancy in those with two or more naevi, and allows be,er predic@on of outcome depending on what is seen on the scan. There have never previously been enough pa@ents with enough MRIs all in one group in the world to do a study of this size.

Annual Report 2013-14

Awareness As a charity, we want to raise awareness and gain external profile of Caring Ma,ers Now. We want to raise awareness of CMN in the medical field, so pa@ents are given correct informa@on and advice about CMN. We are also very keen to raise our profile na@onally and interna@onally through media coverage, corporate support and fundraising projects for the general public.

A Global Footprint for Caring Ma,ers Now

Corporate Support

This year we have seen an increase in the number of businesses, organisa@ons and schools who have chosen to support Caring Ma,ers Now. This is as a result of the CMN Champions awards scheme which was established in January 2013. We have also developed this year corporate challenges, where corporates can sign up to a team challenge and raise funds for Caring Ma,ers Now.

This year we have spent @me developing our charity footprint globally. We a,ended the 2013 CMN Expert Interna@onal Mee@ng along with Dr Kinsler who presented her research findings to all the conference a,endees. Caring Ma,ers Now has also been an integral part in developing the ‘Naevus Global’ ini@a@ve. Naevus Global is an umbrella organisa@on that aims to bring together all the CMN support associa@ons across the world. A Naevus Global website has been established, in which Caring Ma,ers Now features. Jodi Whitehouse is on the board of Naevus Global, represen@ng Caring Ma,ers Now.

Annual Report 2013-14


Raising awareness in the UK

This year we have developed our partnerships with a number of UK medical agencies, including Gene@c Alliance UK and Rare Diseases UK. We a,ended the 2013 Bri@sh Associa@on of Dermatologists conference in Liverpool, where Dr kinsler presented her CMN research findings.

Raising awareness in the medical field

This year Dr Kinsler has been very busy raising the profile of CMN. Dr Kinsler has been the guest speaker at 7 large medical conferences. As well as speaking at these large gatherings, Dr kinsler has also presented her CMN research at the 2013 Interna@onal CMN Medical Experts Mee@ng in Marseille.

Annual Report 2013-14

You can help

Call us on 07786 458883 Email us at info@caringma,

You can help by giving a voice

Raise awareness by promo@ng us on Facebook:,ersnow Twi,er: twi,

You can help by giving @me

We are a community of people who give our @me to commit to suppor@ng those affected by CMN syndrome and funding the research. This is done in countless ways. Offer your @me by taking on a Caring Ma,ers Now challenge, hos@ng a fundraiser or share your skills, talents and experiences with us.

You can help

You can help by giving money

Giving a monthly dona@on is the best way you can help us support those affected by CMN syndrome. It gives us a steady income stream so we can con@nue to invest in the research and offer the best support for our members.

Thank you The trustees of Caring Ma,es Now would like to acknowledge the volunteers, donors, supporters and fundraisers, whose determina@on and commitment makes our work possible. Without you, Caring Ma,ers Now would not be able to support all our children and adults with CMN syndrome and the CMN research.

CMN TRUSTEES Val Unsworth Jessica Ma Ian Chance

Jodi Whitehouse Anne MacIntyre

Lucy Hardwidge Andrew Selwood

Caring Ma,ers Now Postal Address: PO Box 732, Cambridge, CB1 0QF Tel: 07786 458883 Email: info@caringma, Website: www.caringma,

Registered Charity Number: 1120988