Annual Report 2015-2016

Annual Report !

2015-16

Content Introduction Page 4

What is CMN Page 5

Financial overview Page 7

Support Page 9

Research Page 12

Awareness page 17

Future page 19

Introduction Since Caring Ma,ers Now became a registered charity in 2007, 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.

This year, the Caring Ma,ers Now board of trustees have grown in number and strength.

Bronagh Cleland and Robert Jackson have been appointed as trustees. Both trustees are parents of children affected by CMN and have much to offer to our charity. Bronagh is commi,ed to expanding the work of Caring Ma,ers Now across Ireland and Robert is focused on helping the charity develop our corporate support. Furthermore, we have also appointed Ian Chance as the charity treasurer. Ian has been on the board of trustees for the past 3 years and I am thrilled he is able to take on the treasurer responsibility, as he has a depth of financial knowledge within his employment work.

Not only have we grown in trustee numbers, but we have also grown in staffing. This year we have employed Lisa Sly to take on the responsibility of financial administrator.

Lisa will be working a small number of hours each month to ensure the charity is working inline with the charity commission financial guidelines and to ensure all finances are closely monitored, accoun@ng for every penny donated and spent.

This year our charity has been able to donate £101,057 towards the CMN research at the Ins@tute of Child Health. This is over half (55%) of our total annual outgoings being given to CMN research. Furthermore, our income for 2015-16 has been astonishing, with £119,179 given in dona@ons by our members and supporters. My hearZelt thanks goes to all those who have donated @me and money to Caring Ma,ers Now. 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, as 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 2015-16

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 oaen hairy and the texture tends to be soaer, 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 oaen creates the feeling of isola@on. This is why support is of paramount importance.

Annual Report 2015-16

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. Aaer 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.

Now we have found the CAUSE, it is 7me to ďŹ nd the CURE.

Annual Report 2015-16

Financial Overview 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.

In the ďŹ nancial year 2015-16 Caring Ma,ers Now received a total of ÂŁ119.179, with individual dona@ons and charity fundraising events making up the vast majority (73%) of income.

2015-2016 Income

Dona@ons (34%)

Payroll Giving (0%)

Corporate/School Dona@on (7%) Other Income (5%) Merchandise (0%)

Paypal 2012-2015 (7%)

Events (39%)

Grants (8%)

Financial Overview

Annual Report 2015-16 During the 2015-16 financial year, Caring Ma,ers Now spent in total 184,269 on support, research, raising awareness and the day-to-day management of the charity. Since 2007 the charity’s expenses have steadily risen each year, primarily due to the growing size and complexity of the charity.

The charity’s largest outgoings are always the funds paid for research at the Ins@tute of Child Health, and this year was no excep@on. A whopping £101,057 was given towards CMN research in 2015-16. This makes the total research dona@ons since 2007 an incredible £230.078!

To read more about what research our funding is suppor@ng, please turn to pages 12 & 13 .

Outgoing 2015-2016 Support (10%) Events (3%) Personnel (16%) PR Materials (4%) Research (55%)

Annual Report 2015-16

Support Our priority as a charity is to first and foremost offer the best support to those affected by CMN 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.

Caring Ma:ers Now support days This year we held our support days in London, Glasgow and Liverpool. Our support days were funded by Children In Need. Each day was very well a,ended by our members, with each event a,rac@ng on average 8 a,endees. Dr Kinsler a,ended each support day and was able to give an update on her CMN research. Our regional support contacts were also in a,endance, developing friendships with our members.

Regional Gatherings This year we held more regional gatherings than ever before. Regional gatherings took place in Dublin, Brighton, Bridlington and Farnham. The regional gatherings ranged from a variety of ac@vi@es, including beach picnics, indoor play areas and coffee mornings.

Annual Report 2015-16

Caring Ma:ers Now AcFvity Weekend Our Caring Ma,ers Now Ac@vity Weekend took place at PGL in Nomngham. 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 places for all children and adults aected by CMN, cos@ng the charity £3974.25.

Support

Annual Report 2015-16

Meet the Specialist This year we held our first Meet the Specialist event which took place at the Ins@tute of Child Health. This event was designed for parents and adults affected by CMN to come together and to hear of the most recent CMN research findings. As well as giving an update on most recent research findings, Dr Kinsler and her research team presented their current studies and hopes for the future. This event was very well a,ended with a full house and feedback has been very encouraging.

Adult Gathering Following the Meet the Specialist event, Caring Ma,ers Now held an adult gathering for all our adult members affected by CMN. Our adult members shared their personal stories and experiences whilst enjoying an evening meal in the Capital funded by Caring Ma,ers Now.

Support

Annual Report 2015-16

Research

UK research into CMN takes place at Great Ormond Street Hospital (GOSH) and the next-door UCL Ins7tute of Child Health (ICH).

The CMN research is led by Dr. Veronica Kinsler who works in both ins7tu7ons.

This year Caring Ma.ers Now gave £101,057 towards CMN research.

Caring Ma:ers Now Research Assistant During 2015-16 Caring Ma,ers Now gave £18,585.50 to fund a CMN research assistant Lara Al Olabi for six months. Lara has been carrying out experiments on the new gene Dr Kinsler found in families which does not directly cause CMN but seems to make it more likely to happen in some families. This is very important research as it has major implica@ons for melanoma in people without CMN as well, which is not only useful but allows us to have our research no@ced by a wider scien@fic community.

Annual Report 2015-16 Caring Ma:ers Now PhD Fellowship This year Caring Ma,ers Now gave £80,000 to fund a 3-year PhD post at the Ins@tute of Child Health. This Caring Ma,ers Now Fellowship has been awarded to William Baird, who began working in the laboratory December 2015. William is growing cells to start tes@ng different ways of trying to correct the NRAS gene mistake that leads to most CMN. He is jointly supervised by Dr Veronica Kinsler and Prof Steve Hart in the gene therapy research department at the Ins@tute of Child Health. This study will only be in the laboratory, not in pa@ents, but it is a first opportunity for us to look for ways of trea@ng the problem of CMN at its source.

Research

Annual Report 2015-16

Research

Dr Kinsler con@nues to raise CMN awareness, speaking at a number of medical conferences in 2015-16

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European Society of Paediatric Dermatologists biannual conference European Society of Pigment Cell Research annual conference

Dr Kinsler con@nues to raise CMN awareness, publishing a number of medical journal ar@cles in 2015-16

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Mar@ns da Silva V, Kinsler V. Infan@le haemangiomas do not occur more frequently in children with congenital melanocy@c naevi. Br J Dermatol, 2016 June 8 Waelchi R, Williams J, Cole T, Da,ani M, Hindmarsh P, Kennedy H, Mar@nez A, Khan S, Semple R, White A, Sebire N, Healy E, Moore GE, Kinsler VA. .Growth and hormonal profiling in children with congenital melanocy@c naevi. Br J Dermatol. 2015 Dec;173(6):1471-8. Commentary in same issue.

Waelchli R, Ayle, SE, Atherton D, Thompson D, Chong WK, Kinsler VA. Classifica@on of neurological abnormali@es in children with congenital melanocy@c naevus syndrome iden@fies MRI as the best predictor of clinical outcome. Br J Dermatol. 2015 Sep;173(3):739-50.

Pawlikowski JS, Brock C, Al-Olabi L, Nixon C, McGregor F, Paine S, Chanudet E, Lambie W, Holmes WM, Mullin JM, Wu H, Blyth K, King A, Kinsler VA (joint senior authorship), Adams PD. Acute post-natal inhibi@on of MEK reverses features of congenital melanocy@c nevus syndrome in a novel murine model driven by ac@vated RAS and Wnt signaling. J Invest Dermatol. 2015 Aug;135(8):2093-101.

Research

Annual Report 2015-16

A very special award is presented to Dr Veroncia Kinsler

This year Dr Veronica Kinsler won the coveted Great Ormond Street Hospital 2015 Child and Family Award.

This award is given to a very special individual or team nominated by a pa@ent, parent or carer, who is a great team member and is always welcoming, helpful and expert. There were over 200 nomina@ons received in this category. Dr Kinsler received more than 50 nomina@ons, which is a record number. The panel, which was chaired by the Chief Execu@ve and included staff and a parent representa@ve, noted that many of the nomina@ons spoke about the research Dr Kinsler is doing into CMN which provides pa@ents and parents with reassurance that they are being treated by a world class specialist, and provides hope that there may be improved treatments – even a cure –in the future. But they also talked about Dr Kinsler as a person – her care and compassion, the respect she shows to families, and the personal dedica@on she demonstrates. The panel felt that Dr Kinsler was a very worthy winner of this year’s Child and Family Award.

A message from Dr Kinsler:

To all the children and families who nominated me for the GOSH child and family award, I am overwhelmed by your nomina7ons for this award. I cannot tell you adequately how much it means to me that you feel I am looking aTer you well, and that you can see that I am trying my best for you even when I can’t yet offer you treatments for this disease. Occasionally in Medicine there are true partnerships between pa7ent groups and individual doctors, which are in fact largely based on mutual trust built up over many years, and as a result are oTen a highly successful and produc7ve way to tackle disease. This is one such pairing, and this award is such a boost to me to know that overall we are proceeding in the right direc7on in this long haul, life’s work project of sor7ng out CMN. With many thanks to you all Veronica Kinsler

Annual Report 2015-16

Awareness

As a charity, we want to raise the profile of Caring Ma,ers Now and the CMN condi@on, especially in the medical field, so pa@ents are given correct informa@on and advice about CMN.

Caring Ma:ers Now InternaFonal Developments

During this year, the CMN trustees have been focused on raising awareness of our charity on an interna@onal level.

In March 2016 Caring Ma,ers Now hosted our first ever Interna@onal Support Group Conference in London for all known CMN support groups across the world. 13 CMN support groups were represented from across 5 con@nents. During the 3-day conference our guests gained an insight into the work of Caring Ma,ers Now by visi@ng the CMN research laboratory at the Ins@tute of Child Health and par@cipa@ng in some research of their own, as well as, hearing of the latest research findings and ongoing work from Dr Kinsler and her CMN research team. Our guests also received support training and copies of Caring Ma,ers Now support materials to distribute in their own countries. In addi@on they had the opportunity to a,end our London Support Day where they met many of the Caring Ma,ers Now members and families. The weekend was a very special @me for all.

Due to the success of the Caring Ma,ers Now Interna@onal Support Group Conference, we as a charity have decided to further develop our Interna@onal rela@ons by establishing the Caring Ma:ers Now InternaFonal Partnership Scheme. We are invi@ng all exis@ng interna@onal support groups and individuals who would like to start or further develop support in their own countries to partner with Caring Ma,ers Now. As a charity, we would like to encourage our interna@onal friends to con@nue in offering excellent support, medical informa@on and up-to-date research findings to those affected by CMN in each country.

Awareness

Annual Report 2015-16

We are very keen to raise our proďŹ le na@onally and interna@onally through media coverage, corporate support and fundraising projects for the general public.

BBC North West Tonight In November 2015, BBC featured Caring Ma,ers Now on the North West Tonight news programme as a result to our charity receiving ÂŁ10,000 to fund all our 2015-16 support events. The feature was aired on the same evening as the Children in Need na@onal campaign programme. This feature raised awareness of CMN and the Caring Ma,ers Now charity.

Medical Conferences We a,ended pres@gious medical conferences across the UK, including the Bri@sh Associa@on of Dermatologists 2015 conference, the Royal College of Midwives 2015 conference and the Bri@sh Dermatologist Nursing Group 2015 conference.

Annual Report 2015-16 New literature materials

As part of our vision to raise awareness of the CMN condi@on and our charity, we have invested funds to create new literature materials.

Corporate Flyer We now have a corporate flyer which is intended to a,ract corporates to support Caring Ma,ers Now. The flyer is eye-catching and gives clear informa@on about what CMN is, what our charity does and how funds can help.

Give as you Earn We now have a Give as you Earn flyer which is intended to encouarge members and supporters to give monthly through work schemes, which are tax efficient.

CMN Newsle,er We have re-designed the look of our 6-month newsle,er which is distributed to all our members and supporters. Our hope is the new look will a,ract more readers and result in more support.

Awareness

Annual Report 2015-16 You can help Call us on 07786 458883 Email us at info@caringma,ersnowco.uk

You can help by giving a voice Raise awareness by promo@ng us on Facebook: facebook.com/caringma,ersnow Twi,er: twi,er.com/cmnsupportgroup

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 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 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.

You can help

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 and the CMN research.

CMN TRUSTEES Val Unsworth Jodi Whitehouse Lucy Hardwidge Bronagh Cleland Ian Chance Anne MacIntyre Robert Jackson

Caring Ma,ers Now Postal Address: PO Box 732, Cambridge, CB1 0QF Tel: 07786 458883 Email: info@caringma,ersnow.co.uk Website: www.caringma,ersnow.co.uk Registered Charity Number: 1120988