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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    


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  


Corporate Sponsorship   Grants  


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%  




Support Charity  Personnel   PR  Materials  



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.  


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    



Total number  of  Interna@onal  members    

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



Total number  of  new  members  under  the  age  of  1  year    

Annual Report 2014-15


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


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  


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.    


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.  


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  

Profile for Caring Matters Now

Caring Matters Now 2014-15 Annual Report  

Caring Matters Now 2014-15 Annual Report