Caring Matters Now 2014-15 Annual Report

Annual Report!

2014-15

Content Introduction page 3

What is CMN Page 4

Financial overview Page 6

Support Page 10

Research Page 13

Awareness page 15

Future page 18

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. During this financial year (2014-­‐15), 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 received more media a,en@on than ever before. The charity has featured on Sky News and ITV’s This Morning in July 2014, followed by BBC The One Show in November 2014. As a result of the amazing media coverage, Caring Ma,ers Now has become more well known across the UK and further afield.

Also this year, the Caring Ma,ers Now trustees have seen a huge growth in financial support from our members and supporters, with an amazing £169,000 being donated during the 2014-­‐15 financial year.

This is a growth of £93,000 compared to last year’s income and is a phenomenal amount of funds raised for a charity of our size.

My hear[elt thanks goes to all those who have donated @me and money 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, 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

Introduction

Annual Report 2014-15

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 ogen hairy and the texture tends to be soger, 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 ogen 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. Ager 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 2014-15

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 2014 to 31st March 2015. Caring Ma,ers Now achieved £169K in dona@ons in 2014. This is a growth of £93K from last year’s dona@ons received. The majority of funding (£101K) came from individuals. Other key events were the Charity Dinner Dance, which encouraged corporate support and the Caring Ma,ers Now PhD research post campaign. The charity also received grants from Children In Need and Jeans4Genes.

5% 2%

Income Individual Dona@ons

8%

Corporate Sponsorship Grants

23%

Monthly Dona@ons 62% Other

Annual Report 2014-15 Raising funds for pioneering CMN Research In 2014-­‐15 Caring Ma,ers Now made a promise to raise £80K to fund a CMN PhD Research Post at the Ins@tute of Child Health. This 3-­‐year post would be under the supervision of Dr Veronica Kinsler. To the trustees u,er amazement, the support given to this campaign was astonishing and the funds were raised far quicker than expected. This was partly due to the successful Charity Dinner Dance we held in September 2014, which raised £20,000. The full amount of £80,000 is to be transferred during the 2015-­‐16 financial year, with the PhD post star@ng in October 2015. c

Further successful fundraising ac9vi9es An astonishing £101,000 was raised by individual fundraising ac@vi@es during the 2014-­‐15 financial year.

Fundraising ac@vi@es included, marathons, cycling challenges, text dona@ons, Ice-­‐bucket challenge, coffee and cake mornings, balloon races, skydives, etc. c

Financial Overview

Financial Overview

Annual Report 2014-15 During the 2014-­‐15 financial year, Caring Ma,ers Now spent in total 78K on support, research, raising awareness and the day-­‐to-­‐day management of the charity. This sum of money means that our income over expenses was £90,000. Here we have clear evidence of how the charity has grown in support over the last 12 months and it is with thanks to all our members and supporters for raising such phenomenal amounts of money. However, we all must not become complacent in con@nuing to raise funds for Caring Ma,ers Now, as we promise all extra funding received will be pumped into the CMN research.

At the beginning of the next financial year, the majority of funds will be given to finance a NEW posi@on within the CMN research team. To read more, please turn overleaf.

7%

4%

Expenses

8%

Support Charity Personnel PR Materials

31%

50%

Research Admin

Annual Report 2014-15

Since 2007, Caring Ma,ers Now has donated £129,000 towards the CMN research (excluding the £80,000 PhD fund). This incredible amount of funds generated by our members and supporters is largely due to the dedica@on of our charity’s treasurer, Jessica Ma. Jessica has managed the Caring Ma,ers Now funds for the past 5 years, and it is because of Jessica’s astute financial thinking, that the charity has reached such astonishing figures.

Jessica brought to our board of trustees many things; she was a clear thinker, a problem solver, she was known to respond rather than to react. Jessica was wise and discerning, she was willing to have poten@ally difficult and hard conversa@ons enabling the charity to func@on to its best ability.

It is with great sadness that Jessica Ma lost her 10 year ba,le to cancer in December 2014. The charity will miss Jessica very much and will always be indebted to Jessica for her commitment and dedica@on as CMN treasurer and trustee.

Just a few days before Jessica died, Jodi received a phone call from her, and in true Jessica-­‐style, she had called “to sign off”. Well Jessica may have signed off but her immeasurable contribu@on to our charity lives on!

Financial Overview

Annual Report 2014-15

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 on average 100 -­‐ 150 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 regional gatherings in Nosngham and Dublin. Our dedicated CMN regional support contacts organised small gatherings within their region for CMN members to develop friendships and share experiences.

The regional gatherings have been so successful that 5 more events are planned for 2015-­‐16.

Annual Report 2014-15 Caring Ma,ers Now Ac@vity Weekend Our Caring Ma,ers Now Ac@vity Weekend took place at PGL in Nosngham. 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 received funding from a Jeans4Genes grant which covered the cost of all children and adults with CMN who a,ended the weekend.

CMN Adult Developments This year we have held our second CMN adult-­‐only support gathering in London. The gathering was well a,ended, with a small number of adults a,ending for the first @me. We are keen to con@nue developing the adult support structure, so further plans have been put in place for 2015-­‐16.

Regional Support Contacts Throughout 2014-­‐15 we have seen a real increase in CMN members reaching out for support from our regional support contacts. This year, we held a training day for all our regional support contacts, enabling them to offer excellent support to our members when required.

Support

Annual Report 2014-15

How new members found us: 10 referrals from Dr Kinsler 8 internet search

Support Total number of new members in 2014/15

35

6

Total number of Interna@onal members

4 referrals from Interna@onal CMN organisa@ons 3 from media source (TV/Newspaper)

13

Total number of new members under the age of 1 year

Annual Report 2014-15

Research

Research Progress

Molecular characteriza9on of large cohort of CMN pa9ents from pre-­‐exis9ng samples for NRAS and BRAF genotyping. Work s@ll in progress, will be submi,ed for publica@on most likely around Jan 2017. Important for delinea@ng the disease at a molecular level and for making genotype-­‐phenotype correla@ons (i.e. seeing if pa@ents with these muta@ons have any different characteris@cs in their naevi or neurological or malignant disease than those without these muta@ons) Important for iden@fying those pa@ents who are muta@on nega@ve for both these genes, and therefore in whom the causa@ve genes are yet to be iden@fied.

UK research into CMN takes place at Great Ormond Street Hospital (GOSH) and the next-­‐ door UCL InsGtute of Child Health (ICH). The CMN research is led by Dr. Veronica Kinsler who works in both insGtuGons.

Annual Report 2014-15

Research

Dr Kinsler con2nues to raise CMN awareness, speaking at a number of medical conferences in 2014-­‐15

•

World Congress of Dermatology, Vancouver 2015

•

Dutch-­‐speaking Dermatologists SNNDV, Antwerp Mar 2015

•

World Congress of Cancers of the Skin, Edinburgh Sept 2014

•

European Society of Paediatric Dermatology, Kiel 2014

•

European Academy of Dermato-­‐Venereology, Belgrade 2014

•

EORTC melanoma conference, London 2014

Research

Annual Report 2014-15

Dr Kinsler’s Research Publica2ons rela2ng to CMN in this period

Prizes/Awards received by Dr Kinsler

Child and Family Award, Great Ormond Street Hospital 2015

Spinoza Visi@ng Chair of Medicine 2015 Amsterdam Medical Centre, University of Amsterdam Spinoza lecture: Congenital melanocy@c naevi; new insights 2015

1. Regula Waelchi, Jane Williams, Tim Cole, Mehul Da,ani, Peter Hindmarsh, Hilary Kennedy, Anna Mar@nez, Saba Khan, Robert Semple, Anne White, Neil Sebire, Eugene Healy, Gudrun Moore, Veronica Kinsler. .Growth and hormonal profiling in children with congenital melanocy@c naevi. Epub Sept 2015 Brit J Dermatol.

2. 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 May 12. doi: 10.1111/bjd.13898.

Epub ahead of print.

3. 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 Mar 27. doi: 10.1038/jid.2015.114. [Epub ahead of print]

4. Kinsler VA, Krengel s, Riviere J-­‐B, Waelchli R, Chapusot C, Al-­‐Olabi L, Faivre L, Haenssle HA, Weibel L, Jeudy G, Vabres P. Next genera@on sequencing of naevus spilus congenital melanocy@c naevus: exquisite genotype-­‐phenotype correla@on in mosaic RASopathies. J Invest Dermatol 2014 Oct;134(10):2658-­‐60. Commentary in same issue.

Annual Report 2014-15

Awareness As a charity, we want to raise awareness and gain external profile of Caring Ma,ers Now and 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 very keen to raise our profile na@onally and interna@onally through media coverage, corporate support and fundraising projects for the general public.

The One Show In November 2014, BBC The One Show featured Caring Ma,ers Now in the build up to the Children in Need campaign. This feature raised na@onal 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 conference and Rare Diseases conference.

Annual Report 2014-15 In July 2014, Caring Ma,ers Now featured on ITV ‘This Morning’ and Sky News, as a result of a very special visit from Didier and his mum Luz, who featured in the channel 4 ‘Turtle Boy’ documentary in 2011. Since the documentary was aired, a small group of folk worked hard in making it possible for Didier and his mum to visit us here in the UK for one week. Didier had 6 full days experiencing the sights of London, mee@ng children affected by CMN for the very first @me, taking part in the CMN research at Great Ormond Street Hospital and being featured on na@onal television. Amazing memories were created for Didier, his mum and all those involved.

Furthermore, throughout 2014-­‐15 Caring Ma,ers Now has con@nued to work hard in raising awareness of CMN in the medical field. Over the past 12 months, we have a,ended the Bri@sh Associa@on of Dermatology conference in Liverpool, where Dr Kinsler presented her CMN research to all UK dermatologists. We waved the CMN flag as the Rare Diseases UK AGM in London.

Awareness

Annual Report 2014-15 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 Jessica Ma

Jodi Whitehouse Anne MacIntyre

Lucy Hardwidge Ian Chance

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