Caring Matters Now Annual report 2012-13

Annual Report!

2012-13

Content Introduction page 3

What is CMN syndrome 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 Naevus syndrome, raising funds for CMN syndrome research and raising awareness of CMN syndrome.

During this financial year (2012-­‐13), 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, the Caring Ma,ers Now trustees took a huge leap of faith by financially funding my posi@on as CEO of Caring Ma,ers Now. This is an investment of finances, which the trustees believe will gain long-­‐term sustainability and growth for the charity.

A further development to the charity is the change in the name of the condi@on, Congenital Melanocy@c Naevus (CMN). On the advice of Dr Kinsler, we have added the word ‘syndrome’ to Congenital Melanocy@c Neavus. This is due to the developments in understanding the neurological complica@ons related to CMN, some@mes referred to as NCM (Neurocutanrous Melanosis). As a charity we want to offer the most specialised support for children and adults with CMN and NCM, therefore we can group both forms of the condi@on under the one @tle Congenital Melanocy@c Naevus syndrome (CMN syndrome).

My hearSelt 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, the trustees and I are extremely grateful. Without the support from you all, Caring Ma,ers Now would not be able to func@on. Thank you for your generosity over the past year and it really is a privilege to share our annual report with you.

Jodi Whitehouse – Chief Execu@ve Officer

Annual Report 2012-13

What is CMN syndrome?

Congenital Melanocy@c Naevus (CMN) syndrome is the associa@on of brown or black moles present at birth, neurological problems including brain tumours, characteris@c facial features, and an increased risk of malignant melanoma (skin cancer). As with many syndromes not all the features are present in every person affected, and different features are more likely to happen in certain circumstances. For example, the more of the skin covered in CMN at birth the more likely that there are brain problems as well, and the higher the risk of melanoma.

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 o^en hairy and the texture tends to be so^er, 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 o^en creates the feeling of isola@on. That is why we feel support to those affected is of paramount importance; To support those affected by CMN.

Annual Report 2012-13

What is CMN syndrome?

Early in 2013 we found that CMN syndrome 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. A^er 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, with a peak age of seven years. 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 2012-13

Our annual fundraising target was set at £45,000. This covers research projects, administra@ve support to develop the charity and the much needed support for all families affected by CMN syndrome.

Appealing to the general public to raise funds for rare disorders such as CMN syndrome is always a challenge, but a challenge not unmanageable for such needed support and research.

We depend almost en@rely on the financial contribu@ons from our members, their friends and families to raise the money we need.

Incoming funds

2% 3% 3% 8%

Monthly Dona@ons CAF Online Fundraising General Dona@ons Ac@vity Weekend Other

34% 50%

Incoming Funds

General Dona@ons 50% Online fundraising 34% Ac@vity Weekend 8% Monthly Dona@ons 3% Charity Aid Founda@on 3% Other 2%

TOTAL INCOMING FUNDS: £45,778

Financial Overview

Annual Report 2012-13

Outgoings Funds Personnel

7%

3% 2%

Marke@ng Ac@vity Weekend Support Research

10% 14%

Admin Training

29%

15%

20%

Conference A,endance

Outgoing Funds Investment of funds

This year, the trustees took the ini@a@ve of inves@ng funds in contrac@ng Jodi Whitehouse to work 2 days a week for Caring Ma,ers Now. Jodi’s main role is to develop Caring Ma,ers Now beyond the current capability of the charity. Therefore, the trustees goal is to invest funds during this financial year, which will produce further funds in the following financial years, ensuring the security of the charity. This has been possible due to the fact that, the CMN syndrome research is con@nuing to be funded with the help of previous year funding.

Jodi’s main aim is to raise the profile of Caring Ma,ers Now, which in return will benefit the charity financially in the long term.

Personnel 29% Marke@ng 20% Ac@vity Weekend 15% Support 14% Research 10% Admin 7% Training 3% Conference A,endance 2%

TOTAL OUTGOING FUNDS: £55,466

Support

Annual Report 2012-13 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

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. 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.

New members

31 new CMN syndrome members have joined us this year, of which 12 were under the age of 1 year, 10 aged 1-­‐5 years, 6 aged 6-­‐16 years and 3 over 16 years.

“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“

Turner Family

Caring Ma,ers Now Ac@vity Weekend

Our Caring Ma,ers Now Ac@vity Weekend took place at PGL in Shropshire.

22 families a,ended the weekend and it was a really special @me for the children, as well as the adults. It was great to have teenagers a,ending the weekend, along with our teenage support contact. The trustees believe this weeeknd is of such value for our members, that the charity funds the a,endance of all those with CMN syndrome.

Support

Annual Report 2012-13 Support Literature

This year, our Caring Ma,ers Now support literature was much improved, with a new and informa@ve CMN syndrome informa@on leaflet and medical booklet.

Specialist Support for Neurological Complica@ons

Regional Support Contacts

Caring Ma,ers Now has 11 regional support contacts situated across the UK. All our support contacts are either adults with CMN syndrome or parents of children with CMN s syndrome.

Our regional support contacts are at hand to give one-­‐to-­‐one support to members living in close proximity to themselves.

This year, we held a training day for all our Regional support Contacts, which was a,ended by all 11 contacts. The day provided updates on the CMN syndrome research, developments within the charity, listening skills to help with support progression, and an opportunity to share experiences and support one another in this extremely important role.

This year we have developed our specialised support for children and adults with neurological complica@ons of CMN. This includes a specialised support contact, who is a mum of a child with neurological complica@ons.

Research

Annual Report 2012-13 Gene@cs project

This year Dr Kinsler achieved the aim of elucida@ng the gene@c basis for CMN syndrome. The gene mutated is called NRAS, and is an important gene in both foetal development and in cancer. This work has been published and presented na@onally and interna@onally, with Caring Ma,ers Now acknowledged as an important funder. The NRAS finding will allow us to push forward with research into poten@al treatment strategies.

UK research into CMN syndrome takes place at Great Ormond Street Hospital NHS Founda@on Trust (GOSH) and the next-­‐door UCL Ins@tute of Child Health (ICH), and 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. In theory, with the right combina@on of pa@ent par@cipa@on in research studies, adequate funding, and good researchers, most condi@ons in medicine will eventually be understood.

CMN syndrome Hormone Study and Dr Regula Waelchli.

This study now been completed, thanks to the par@cipa@on of our CMN children and families. This study is being significantly aided by the presence of a clinical fellow from Switzerland, Dr Regula Waelchli, who is part funded by Caring Ma,ers Now funds.

Annual Report 2012-13

Research Prizes for NRAS Finding

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.

Academic presenta@ons

In the last year, Dr Kinsler has presented her research at na@onal and interna@onal mee@ngs.

The presenta@ons help to raise the profile of the condi@on in medical circles, and promote the CMN syndrome clinic and research at GOSH.

The immunohistochemistry project

This project was published this year. Dr Kinsler found that there were interes@ng markers on the surface of CMN cells which suggests they may be a type of skin stem cell, rather than a melanocyte. This is helpful for planning treatment inves@ga@ons.

Annual Report 2012-13

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

We are also very keen to raise our profile through media coverage, corporate events and fundraising projects for the general public.

Corporate Support

This year we have been focusing on increasing our corporate support by developing good rela@ons with various large organisa@ons across the UK. Our members have introduced Caring Ma,ers Now to their own employers or through corporate contacts. We have seen an increase in corporate support over the past year, and we aim to con@nue to grow in this area.

Awareness Media / Celebrity awareness

This year we had the great honor of being the recipient of a huge fundraising event organised by Sky Sports presenters and producers.

This event raised the profile of Caring Ma,ers Now more than ever before, as well as raising over £15,000 towards our work, which has since funded a research assistant to help push the research forward at a faster pace.

Annual Report 2012-13 CMN Informa@on Leaflet

This year Caring Ma,ers Now re-­‐published a second addi@on of the CMN informa@on leaflet.

The leaflet is designed to raise awareness of CMN syndrome with the general public, but has the added benefit of a tear off d o n a @ o n s l i p w h i c h h a s generated an increase in dona@ons.

Global Awareness

Caring Ma,ers Now has this year increased our profile interna@onally.

Our CEO, Jodi Whitehouse, was the key-­‐note speaker at the Nevus Global Conference in the USA. Most doctors from around the world who specialise in CMN syndrome were in a,endance, as well as many CMN pa@ents from the USA and other countries around the world.

CMN Medical Informa@on Booklet

This year Caring Ma,ers Now re-­‐published a second addi@on of the CMN medical informa@on booklet. Dr Kinsler re-­‐wrote the booklet to include the most recent research findings, which was funded by Caring Ma,ers Now. This booklet is to be distributed within the medical field to raise awareness of CMN.

Awareness CMN Champions

We have developed a new scheme which was launched in January 2013 called ‘CMN Champions’. This scheme encourages corporates, schools and individuals to engage with our work by raising awareness and funds for Caring Ma,ers Now. An award is given to those who meet the set criteria and become a CMN Champion.

Annual Report 2012-13 You can help

Call us on 07786 458883 Email us at info@caringma,ersnowco.uk

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 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 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

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

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,ersnow.co.uk Website: www.caringma,ersnow.co.uk

Registered Charity Number: 1120988