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Annual Report! 2013-14

Content Introduction page 3 What is CMN 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  Naevi  (CMN),   raising  funds  for  CMN  research  and  raising  awareness  of  CMN.    

During this  financial  year  (2013-­‐14),  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   been   the   growth   in   raising   awareness   both   na@onally   and   interna@onally.   Na@onally,   we   have   been   working   more   closely   with   the   Bri@sh   Associa@on   of   Dermatologists,  Rare  Diseases  UK  and  Gene@c  Alliance  UK.    Interna@onally,  Caring  Ma,ers  Now  has   played  an  integral  role  in  developing  a  global  network  for  all  CMN  support  groups  across  the  world.    At   present   there   are   12   countries   represented   within   the   global   network,   which   has   been   named   Naevus   Global.    Through  our  network,  the  12  representa@ve  support  groups  can  help  one  another  and  share   advice  about  developing  be,er  support  strategies.             Also   this   year,   the   Caring   Ma,ers   Now   trustees   have   seen   a   growth   in   financial   support   from   our   members   and   supporters,   with   £76,000   being   donated   towards   the   work   of   the   charity   and   the   pioneering  research.    This  is  a  phenomenal  amount  of  funds  raised  for  a  charity  of  our  size.    It  is  with   thanks  to  all  our  members  and  supporters  for  con@nuing  to  give  so  generously  towards  our  work  and   helping  us  to  achieve  our  aims  and  fulfil  the  needs  of  everyone  affected  by  CMN.           My   hearXelt   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,  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,   so   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 2013-14

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   oeen   hairy   and   the   texture   tends   to   be   soeer,   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  oeen  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.   Aeer   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 2013-14

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  2013   to   31st   March   2014.     Caring   Ma,ers   Now   achieved   £76K   in   dona@ons   in   2013.     The   majority   (£48K)   came   from   individuals.   Other   key   events   were   the   Sky   Sports   Dancing   with   the   Stars,   the   24  Peaks  in  24  Hours  challenge  and  the   CMN   Champions   campaign,   which   encouraged   corporate   support   and   school  support.  

FY 2013  Dona,ons  -­‐  £76,000   6108  

Indiviiduals 10000   2500   11481.97  

24 Peaks  Challenge  

Sky Sports  dancing  with  the    8,982     starts   Sky  Dive  


All other  (companies/school   events)  

Financial Overview

Annual Report 2013-14 Investment  of  funds   In   2013,   Caring   Ma,ers   Now   donated   £26K   towards   the   CMN   research   at   GOSH   while   £29K   was   spent   on   support   campaigns,   including   the   Support   Days,   Ac@vity   Weekend,  Newsle,ers  and  Support  Packs.    

Our accumulated   dona@ons  to  research   since  Caring  Ma,ers   Now  was  registered  as  a   charity  in  2007  has  now   reached  £124,000.    

FY 2013  -­‐  Outgoing  Funds  



Research Support  Campaigns  

Annual Report 2013-14 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   New  members  

Chat &  Play  Days  

This year   we   held   our   first   ever   regional   Chat   &   Play   Day.     Our   dedicated   CMN   regional   support   contacts   organise   small   gatherings   within  their  region  for  CMN  members   to   develop   friendships   and   share   experiences.    Our  first  Chat  &  Play  Day   was   held   in   Bristol.     We   plan   to   organise  more  of  these  days  next  year.  

As a   result   of   the   working   p a r t n e r s h i p   b e t w e e n   G r e a t   Ormond  Street  Hospital  and  Caring   Ma,ers   Now,   we   are   seeing   an   increase   in   referrals.     Due   to   CMN   awareness   being   raised   by   both   Dr   Kinsler  and  Caring  Ma,ers  Now  we   are  reaching  those  affected  by  CMN   at  an  earlier  age.    This  year,  30  new   CMN   members   have   joined   us   this   year,   of   which   14   were   under   the   age   of   1   year,   2   interna@onal   members,    11  referrals  from  GOSH,   5   referrals   from   social   media   sites   &  8  from  Google  search.  

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.     Our   support   days   were   kindly   funded   by   Kinglsey   Napley   law   firm.     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.  

Annual Report 2013-14 Regional  Support  Contacts  

Caring Ma,ers  Now  has  regional  support  contacts   situated   across   the   UK.     All   our   support   contacts   are   either   adults   with   CMN   or   parents   of   children   with  CMN.       Our   regional   support   contacts   are   at   hand   to   give   one-­‐to-­‐one   support   to   members   living   in   close   proximity  to  themselves.       This  year,  we  have  been  working  on    increasing  our   number   of   regional   support   contacts   from   11   to   12.     The   charity   is   keen   to   develop   support   in   Ireland  over  the  next  12  months.      

Support Exci@ng developments  for  our  CMN  Adult  Members  

This year  we  have  been  developing  our  adult  support.    An  on-­‐ line  adult  community  forum  has  been  developed  and  we  held   our  first  CMN  adult-­‐only  support  gathering.    The  gathering  was   held   in   London   with   6   CMN   adults   a,ending.     We   received   good  feedback  from  our  first  adult  event  and  we  plan  to  hold   another  support  gathering  next  year.  

“ 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“  

Support Literature  

This year,   we   have   started   a   ‘Young   Ones’   newsle,er   which   is   sent   out   with   our   standard   newsle,er.     This   is   wri,en   by   our   teenage   support   contact  and  is  an  appropriate  read  for  our  younger   members.  

Caring Ma,ers  Now  Ac@vity  Weekend  

Our Caring   Ma,ers   Now   Ac@vity   Weekend   took   place   at   PGL   in   Noongham.   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  cost  of  all  the  children  and  adults  with  CMN   who  a,ended  the  weekend.      


Annual Report 2013-14 CMN  research  making  excellent  progress  

The research   has   con@nued   to   make   excellent   progress   this   year   thanks   to   the   funding   of   consumable   costs   for   the   CMN   projects   by   Caring   Ma,ers   Now.     Caring   Ma,ers   Now   members   have   con@nued   to   join   the   research   projects   in   good   numbers.   The   year   has   culminated   in   the   successful   applica@on   to   the   Wellcome   Trust   for   an   Intermediate   Clinical   Fellowship   grant   total   value   £827,000,   to   be   used   over  48  months  from  1st  February  2015-­‐31st  January  2018.    

UK research   into   CMN   takes   place   at   Great   Ormond   Street   Hospital   (GOSH)   and   the   next-­‐door   UCL   Ins@tute  of  Child  Health  (ICH).    The  CMN  research  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.   Gene@cs  of  CMN  

This project  produced  a  big  find  this  year  with  the  discovery  of  a  new  gene  in  about  15%  of  CMN  families  which  seems  to  make  CMN   more   likely   to   occur   in   those   families   (rather   than   being   directly   responsible   for   the   CMN   itself).     Having   found   this   gene   in   CMN   families   we   looked   in   adult   people   with   melanoma   (but   no   CMN)   and   found   that   the   gene   is   also   present   in   some   of   their   families   where  the  melanoma  occurs  at  an  early  age.    This  shows  the  power  of  rare  diseases  in  inves@ga@ng  more  common  condi@ons,  and  it   was  on  the  basis  of  this  finding  (plus  the  research  output  over  the  last  couple  of  years)  that  won  the  Wellcome  Trust  grant.  

Annual Report 2013-14


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.     CMN  neurological  study  

Caring Ma,ers  Now  funding  research  staff  

This year,   Caring   Ma,ers   Now   has   funded   a   research  assistant  to  work  alongside  Dr  Kinsler,  an   administrator   to   support   Dr   Kinsler   and   also   part-­‐ funded   Dr   Regula   Waelchli   who   undertook   the   Neurological  study  for  Dr  Kinsler.  

This study   was   run   with   Dr   Regula   Waelchli   who   worked   under   Dr   Kinsler   for   one   year   2013.     She   collected   together   all   the   neuro   data   we   have   been   collec@ng   in   our   database   for   the   last   20   years,   and   we   analysed   this   data   to   see   if   we   could   decide   which   MRI   scan   findings   were   associated   with   a   good  outcome  or  a  bad  outcome.    This  was  a  very   successful   study   and   it   is   due   to   be   submi,ed   for   publica@on   to   the   Bri@sh   Journal   of   Dermatology   in   the   next   few   weeks.     It   will   have   real   prac@cal   implica@ons   for   CMN   pa@ents   in   the   UK   and   abroad,   as   it   clearly   shows   the   value   of   MRI   scanning   in   infancy   in   those   with   two   or   more   naevi,   and   allows   be,er   predic@on   of   outcome   depending  on  what  is  seen  on  the  scan.    There  have   never   previously   been   enough   pa@ents   with   enough  MRIs  all  in  one  group  in  the  world  to  do  a   study  of  this  size.  

Annual Report 2013-14

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

A Global  Footprint  for  Caring  Ma,ers  Now  

Corporate Support  

This year   we   have   seen   an   increase   in   the   number   of   businesses,   organisa@ons   and   schools   who   have   chosen   to   support   Caring   Ma,ers   Now.     This   is   as   a   result   of   the   CMN   Champions   awards   scheme  which  was  established  in  January  2013.       We   have   also   developed   this   year   corporate   challenges,   where   corporates  can  sign  up  to  a  team  challenge  and  raise  funds  for  Caring   Ma,ers  Now.  

This year   we   have   spent   @me   developing   our   charity   footprint   globally.     We   a,ended   the   2013   CMN   Expert   Interna@onal   Mee@ng   along   with   Dr   Kinsler   who   presented   her  research  findings  to  all  the  conference  a,endees.       Caring   Ma,ers   Now   has   also   been   an   integral   part   in   developing   the   ‘Naevus   Global’   ini@a@ve.     Naevus   Global   is   an  umbrella  organisa@on  that  aims  to  bring  together  all  the   CMN  support  associa@ons  across  the  world.    A  Naevus  Global   website  has  been  established,  in  which  Caring  Ma,ers  Now   features.     Jodi   Whitehouse   is   on   the   board   of   Naevus   Global,   represen@ng  Caring  Ma,ers  Now.  

Annual Report 2013-14


Raising awareness  in  the  UK  

This year   we   have   developed   our   partnerships   with   a   number   of   UK   medical  agencies,  including  Gene@c   Alliance   UK   and   Rare   Diseases   UK.     We   a,ended   the   2013   Bri@sh   Associa@on   of   Dermatologists   conference   in   Liverpool,   where   Dr   kinsler  presented  her  CMN  research   findings.      

Raising awareness  in  the  medical  field  

This year  Dr  Kinsler  has  been  very  busy  raising  the  profile  of  CMN.    Dr   Kinsler   has   been   the   guest   speaker   at   7   large   medical   conferences.     As   well   as   speaking   at   these   large   gatherings,   Dr   kinsler   has   also   presented   her   CMN   research   at   the   2013   Interna@onal   CMN   Medical   Experts  Mee@ng  in  Marseille.          

Annual Report 2013-14

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   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

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.  

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   Ian  Chance    

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  

Profile for Caring Matters Now

Caring Matters Now Annual Report 2013 14  

Caring Matters Now Annual Report 2013 14