Caring Matters Now Annual Report 2016-17

Annual Report 2016-17

Content Introduction Page 4 What is CMN Page 5 Financial overview Page 7 Support Page 10 Research Page 13 Awareness page 17 Future page 19

Introduction Since Caring Matters Now became a registered charity in 2007, the charity has grown from strength to strength. Our priorities remain the same in supporting those affected by Congenital Melanocytic Naevi (CMN), raising funds for CMN research and raising awareness of CMN. Well, where do I start?!?!.... What a year it has been! Firstly, we had a special little visitor at our trustees strategy meeting in September 2016… little Timothy was just 14 days old when he attended his first trustees meeting with his mummy (me!). Yes, it has continued to be a very busy year for our charity, even with being slightly preoccupied during the month of September!

This year, we have seen growth in our Regional Support Contacts team, with Hannah Cree coming on board to support our members living in Northern Ireland. Hannah’s son is affected by CMN and therefore Hannah is passionate about supporting others affected by CMN who live in her region. Our Regional Support Contacts play a vital role within our support structure and I am so thankful for their dedication in caring practically for our members throughout the year.

This year Caring Matters Now held more support events across the UK than ever before.

For the first time ever, we held a CMN Teens Day Out. The aim of this event was to engage with our teenage members more effectively. 11 teenagers affected by CMN attended the events along with a family member. A wonderful time was had, with our teenage members developing friendships and sharing experiences.

It is also a real privilege to highlight the ongoing financial support Caring Matters Now has been able to provide to Dr Kinsler and the CMN research team at Great Ormond Street Hospital and the Institute of Child Health. During 2016-17 financial year, Caring Matters Now donated a further £20,950 to advance the CMN research. This makes the total research donations since 2007 an incredible £251.028! To read more about the research, please turn to pages 13 - 16. My heartfelt thanks goes to all those who have donated time and money to Caring Matters Now during the past 12 months.

It really is my privilege to share our 2016-17 annual report with you, as you can see the difference you are making to the lives of those affected by Congenital Melanocytic Naevi.

Jodi Whitehouse – Chief Executive Officer

Little Timothy & the CMN trustees at the September Strategy Meeting

Annual Report 2016-17

What is Congenital Melanocytic Naevi?

Congenital Melanocytic Naevi (CMN) are brown or black moles present at birth, covering up to 80% of the body. Large or multiple CMN are mostly untreatable and carry an increased risk of malignant melanoma, the most dangerous form of skin cancer.

CMN syndrome is the association of these moles with brain and spinal problems, such as tumours, fluid on the brain, fits and developmental problems, and/or characteristic 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 often hairy and the texture tends to be softer, looser and more wrinkled than normal skin tearing easily if traumatised. Large or multiple CMN are untreatable. Due to the appearance of CMN it causes a great deal of anxiety and stress to those affected and often creates the feeling of isolation.

This is why support is of paramount importance.

What is Congenital Melanocytic Naevi?

Annual Report 2016-17

Early in 2013 we found that CMN is caused by a mutation in the gene NRAS that occurs when the baby is developing in the womb.

During

development in the womb the mutation changes how those cells are supposed to develop, leading to the birthmarks and/or the brain changes.

These

changes are permanent. After the baby is born the mutation is still present in the cells, and it is this which

increases

the

chance

of

developing

melanoma.

We have found the CAUSE, Now it is time to find the CURE.

Financial Overview - Income

Annual Report 2016-17 Caring Matters Now is funded entirely by donations from individuals, groups and some grant giving trusts. The charity receives no Government funding.

In the financial year 2016-17 Caring Matters Now received a total of £110,393, with individual donations and fundraising events raising over half (51%) of our overall income.

The CMN London Marathon team raised £4,470 and the CMN Nightrider team raised £8,400. It is with huge thanks to all our supporters for raising such wonderful amounts of funds to further develop the charity’s work.

2016-2017 Income

Caring Matters Now received a £10,000 grant from Children in Need to fund all our support events during this financial year.

Donations (26%)

Payroll Giving (1%)

Corporate/School Donation (20%)

Other Income (2%)

Merchandise (0%)

Events (25%)

Grants (9%)

Dinner Dance (17%)

Financial Overview - Expenditure

Annual Report 2016-17 Since the formation of Caring Matters Now, the charity’s largest outgoings each year has always been funding the pioneering CMN research at the Institute of Child Health.

During the last financial year (2015-16), the charity gave a whopping £101,057 towards the CMN research. This huge

During the 2016-17 financial year, Caring Matters Now spent in total £90,825 on support, research, raising awareness and the day-to-day management of the charity.

amount of money is currently funding a 3-year research project, taking the research funding to 2018. Despite such a

Outgoing 2016-2017

huge amount of funds invested into CMN research last year, the charity has continued to meet new and exciting research funding requests received from Dr Kinsler at the Institute of Child Health during the 2016-17 financial period.

Caring

Matters Now has donated a further £20,950 to advance the CMN research during 2016-17. This makes the total research donations since 2007 an incredible £251.028! To read more about the research, please turn to pages 14 – 17.

As the charity grows each year, so do the demands on charity personnel. Therefore during 2015-16, the CMN trustees agreed to invest funds to strengthen charity personnel by employing a financial administrator to work alongside the

Support (16%)

Events (0%)

Personnel (32%)

charity development officer and the chief executive. Over the

PR Materials (9%)

Research (23%)

Merchandise (1%)

past 12 months, the financial administrator has proven to

Admin (6%)

International Weekend (1%)

Conferences/Meetings (6%)

Dinner Dance (4%)

Other Fundraising costs (2%)

strengthen the day-to-day management of the charity.

Annual Report 2016-17 Jessica Ma Award 2016 In December 2014 one of our founding trustees Jessica Ma lost her battled with cancer. The Caring Matters Now trustees wanted to publicly acknowledge and remember Jessica’s outstanding and unique contribution to our charity. Therefore in 2016 the charity launched the Jessica Ma Award 2016.

Members and supporters registered their fundraising activities throughout the year. Jessica’s husband and two children chose a winner of the award who they believed had clearly gone above and beyond in raising funds for Caring Matters Now. The Jessica Ma Award 2016 was presented to Jon and Donna McCrossan for their outstanding fundraising achievements. Jon and Donna responded to receiving the award with: “We do our fundraising in remembrance of our daughter Holly, who sadly lost her life to complications of CMN and to help raise much needed awareness of the condition and to support the ongoing research into finding a cure. Together we will find a cure”.

Financial Overview – developments As the charity grows each year, so do the demands on increasing charity income. The charity trustees are continually looking for new ways to engage members and supporters to partner with Caring Matters Now in our fundraising initiatives.

CMN Hero – monthly giving During 2016-17, the charity launched the CMN Hero campaign.

The campaign encourages members and supporters to give to the charity on a regular basis through monthly donations. This form of giving provides the charity with sustainable regular income and enables the trustees to manage how funds are spent in a more strategical way.

During 2016-17, there are just 8 individuals who donate to the charity on a monthly basis. Our ambition is to see this number increase over the next financial year.

Annual Report 2016-17

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 Matters Now. Our further two aims for the charity (research and awareness) flow from the support we offer to all our members.

During 2016-17, Caring Matters Now has organised 12 support events across the UK, engaging 163 children and 184 adults. All our support events were funded by a Children in Need grant.

Caring Matters Now support days This year we held our 3 support days in London, Liverpool and Dublin. This is the first time we have held a support day in Ireland. 60 people attended the Dublin support day, along with Dr Kinsler who gave an insight into the CMN research Caring Matters Now funds.

Regional Gatherings This year we held more regional gatherings than ever before, 7 events in total. The regional gatherings took place in Bristol, Guildford, Bridlington, Brighton, Glasgow, Norfolk and Belfast. The regional gatherings ranged from a variety of activities, including beach picnics, indoor play areas and coffee mornings.

Annual Report 2015-16

Improving age specific support events This year Caring Matters Now held 2 age-specific support events to better engage our teenage members and our adult members.

The teens day out was held at Warner Bros. Harry Potter World in London. This event was well attended with 11 teenagers attending. The teenagers were able to enjoy touring the studios and finishing off by having lunch together and time for chatting. The event received wonderful feedback, and therefore we plan to hold another teens day out next year.

The adult support gathering was held at the Institute of Child Health in London. Dr Kinsler attended this event to present her research work and to answer any questions regarding CMN. 8 adults affected by CMN attended the event and friendships were developed and experiences shared. Those that attended reported how helpful it was to have Dr Kinsler in attendance to answer all questions and to give insight into the CMN research. The CMN trustees plan to organise a similar event next year for those aged 18+ affected by CMN.

Support

Annual Report 2015-16 Growing the Support Structure The Caring Matters Now trustees are continually reviewing the support structure and looking for ways to improve the support provided to all our members.

This year, the regional support contact team has grown in number. Hannah Cree joined the regional support contact team as the Northern Ireland support contact. Hannah organised her first regional gathering in February 2017 which took place in Belfast. At this event Hannah introduced herself to all the Caring Matters Now members from the Northern Ireland area. We are very grateful for all our regional support contacts and their commitment to caring for all charity members throughout the year.

Support Training This year all the regional support contacts came together for a full-day support training session. During the day, the team discussed how collectively we can improve the support offered to charity members. The support contacts gained training in listening skills and received an in-depth research update from Dr Kinsler, enabling the support contacts to be equipped when supporting members.

Support

Please join us this year in our Coffee & Cake Morning fundraising campaign

Annual Report 2016-17 Caring Matters Now Research Assistant During 2016-17 Caring Matters Now gave £20,950 to fund the new research position which Dr Satyamaanasa Polubothu is undertaking, entitled ‘Identification of new genes causing congenital melanocytic naevi and melanoma’. Caring Matters Now funding a 6-month period from 7th March 2016, with a view to reviewing further funding for this project at a later date.

Research – new research project UK research into CMN takes place at Great Ormond Street Hospital (GOSH) and the Institute of Child Health (ICH). The CMN research is led by Dr. Veronica Kinsler, who supervisors a team of CMN researchers focusing on specific areas of research.

Since being in position, Dr Satyamaanasa Polubothu has attended a number of Caring Matters Now support events and presented her current research findings. Furthermore, Dr Satyamaanasa Polubothu has presented her research work at a number of medical conferences internationally.

In June 2016 Dr Satyamaanasa Polubothu supported the Caring Matters Now Coffee & Cake morning by baking a cake and encouraging her work colleagues to make a donation towards the work of the charity.

Annual Report 2016-17

Research – PhD Fellowship

Caring Matters Now PhD Fellowship This year Caring Matters Now continues to fund a 3-year PhD post at the Institute of Child Health. Caring Matters Now started funding this 3-year position during 2015-16 financial year. Over the past 12 month, William Baird, continues his research in growing cells to start testing different ways of trying to correct the NRAS gene mistake that leads to most CMN. William is continually supervised jointly by Dr Veronica Kinsler and Prof Steve Hart in the gene therapy research department at the Institute of Child Health. This study will only be in the laboratory, not in patients, but it is a first opportunity for us to look for ways of treating the problem of CMN at its source.

Annual Report 2016-17 NRAS Gene The research team have been continuing to work hard on the treatment side of things in the lab, with lots of experiments looking at trying to control the NRAS gene in cells growing in plates and flasks. These experiments are aimed at trying to stop the gene being overactive, which is the cause of CMN in 80% of cases. However, we can’t stop it being active altogether because we all need our NRAS to work, and therefore the experiments are looking at trying to make it work at the right level. We have recently made very good headway with this using one particular method, but we are continuing to try another important method because we don’t know which one will end up best. We hope to have some results to publish on the first section of this research by early 2018.

Research – general update

Research samples The research team are also continuing to work hard on finding other genes for CMN, using special methods of screening for mutations. Thank you to everyone who has participated in donating samples to this.

Publications Early this year Dr Kinsler and her research team published three important papers on melanoma in CMN, which were the result of many years of clinical and laboratory research into this rare disease.

The publications will hopefully help guide management of patients with CMN around the world, and we have had lots of feedback suggesting they are being widely read. The papers can be found on the Caring Matters Now website.

Annual Report 2016-17

Research – conferences & publications

Dr Kinsler continues to raise CMN awareness, speaking at a number of medical conferences in 2016-17 •

European Society Paediatric Dermatology 2016

•

European Association Dermatovenereologists 2016

•

European association dermatology-oncologists 2017

Dr Kinsler continues to raise CMN awareness, publishing a number of medical journal articles in 2016-17 •

Copy number abnormalities in new or progressive ‘neuroutaneous melanosis’ confirm it to be primary CNS melanoma.

•

Reduced H3K2&me3 Expression Is Common in Nodular Malanomas of Childhood Associated With Congenital Melanocytic Nevi But Not in Proliferative Nodules.

•

Infantile haemangiomas do not occur more frequently in children with congenital melanocytic naevi.

Annual Report 2016-17 As a charity, we want to raise the profile of Caring Matters Now and the CMN condition, especially in the medical field, so patients are given correct information and advice about CMN. Guardian newspaper publication In conjunction with Rare Diseases Day 2016, Caring Matters Now gained media coverage within the Guardian Newspaper. A personal story from the parents of little Holly who sadly lost her battle to complications associated with CMN was included in the publication.

Awareness Caring Matters Now Story: 20th Anniversary Documentary In preparation of our 20th anniversary celebrations through 2017, the charity produced a short documentary of the Caring Matters Now story. The documentary was viewed by all our members and shared through social media platforms.

The documentary served a greater purpose of raising the profile of Caring Matters Now and awareness of the CMN condition. To view the documentary, use this Link: www.caringmattersnow.co.uk/cmn-20thanniversary-celebrations/ Caring Matters Now International Developments During 2016-17 period Caring Matters Now officially launched the Caring Matters Now International Partnership Scheme. Many CMN support groups around the world have registered with this scheme and as a result, our support materials are being accessed and research updates are being shared worldwide. As a charity, we would like to encourage our international friends to continue in offering excellent support, medical information and up-to-date research findings to those affected by CMN in each country.

Awareness

Annual Report 2016-17 UK Confrences

During 2016-17 period Caring Matters Now exhibited at: British Dermatological Nursing Group, 21st – 23rd June 2016 British Association of Dermatologist, 5th – 7th July 2016 Irish Association of Dermatologists, 6th October 2016 Royal College of Midwives Conference, 19th / 20th October 2016 The conferences serve as a great platform to distribute CMN medical information and engage in CMN conversation with the medical profession.

Annual Report 2016-17 You can help Call us on 07786 458883 Email us at info@caringmattersnowco.uk You can help by giving a voice Raise awareness by promoting us on Facebook: facebook.com/caringmattersnow Twitter: twitter.com/cmnsupportgroup You can help by giving time We are a community of people who give our time to commit to supporting those affected by CMN and funding the research.

This is done in countless ways. Offer your time by taking on a Caring Matters Now challenge, hosting a fundraiser or share your skills, talents and experiences with us.

You can help by giving money Giving a monthly donation is the best way you can help us support those affected by CMN syndrome. It gives us a steady income stream so we can continue to invest in the research and offer the best support for our members.

You can help

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

Thank you The trustees of Caring Mattes Now would like to acknowledge the volunteers, donors, supporters and fundraisers, whose determination and commitment makes our work possible. Without you, Caring Matters Now would not be able to support all our children and adults affected by CMN, fund the CMN research, and raise awareness in the UK and beyond.

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