Rare Disease Day - 28th February 2015



Jodi Whitehouse – CEO

Jodi founded Caring Matters Now with the support of her family and friends in 1997, after being asked by Dr Atherton to support others affected by CMN at Great Ormond Street Hospital. Jodi has CMN herself and therefore understands the impact living with CMN can have on an individual. Caring Matters Now has grown from strength to strength over the years and Jodi sees it as a real blessing and privilege to be a part of the charity. Jodi has met some amazing people who are involved in the Caring Matters Now and she says it is with thanks to her family, friends, CMN trustees, CMN support contacts and Great Ormond Street Hospital that the charity is where it is at today. Over the years Jodi has developed the charity as Chair of trustees and in 2012 she became the CEO of Caring Matters Now. As CEO Jodi is committed to developing the charity in a number of ways. Jodi is focused on developing the support offered to the CMN members, seeking new opportunities to raise funds for CMN research and developing Caring Matters Now support internationally.

Lucy Hardwidge

Lucy has been involved with Caring Matters Now since the birth of her daughter Fay in 2005. Fay was born with a large bathing trunk CMN. Initially Lucy was supporting the charity through fundraising and raising awareness in the local media, but since then she have taken on the responsibility of trustee and is contracted as the Charity Development Officer. Lucy’s background is travel and marketing and so she has been heavily involved in the re-branding of the charity, redesign and production of all of the CMN literature. Lucy now oversees the charity on a day to day basis working closely with Jodi and the other trustees.

Val Unsworth (Chair of Trustees)

Val took up the role of Chair of Trustees in 2012 but she has been involved in Caring Matters Now right from the beginning, supporting Jodi (who is her daughter!) in the founding of the charity. Across the years she has continued to be actively involved and has been amazed to see it develop and grow to what it is today.

When Jodi was born little was known about CMN and there was no support whatsoever available. Val is now very glad that through Caring Matters Now, not only is there appropriate and sensitive support available for families today, but also much is now known about CMN, thanks to the tireless work of Dr. Kinsler.

When Jodi was born it was traumatic and continued to be so for a number of years but now, looking back across more than thirty years, Val acknowledges how it has shaped their lives for the common good, and counts it a huge privilege to be part of the Caring Matters Now family.

Val began her career as a teacher of children with special needs but since has become a qualified counsellor and currently works at Alder Hey Children’s Hospital in Liverpool, supporting bereaved families.

Ian Chance

Ian ChanceIan and his wife Michelle live in South East London and have been involved with the charity for about four years, initially attending the family days with their son Alexander (5) and daughter Jasmin (8) who was born with a large CMN on her face, covering her right cheek and nose. Jasmin was referred to plastic surgeon Mr Bulstrode at Great Ormond Street Hospital at the age of one and began a series of six successful surgical procedures (four serial excisions & two skin grafts) over a four year period to reduce the size of the CMN.

In 2011 Michelle became the CMN regional support contact for the London area and in 2013 Ian was asked if he would become a trustee for the charity. Ian considers it a real honour to be able to join the CMN board of trustees and looks forward to providing support to this remarkable charity. For his day job, Ian manages a busy team in the market monitoring department at the Financial Conduct Authority (FCA) in Canary Wharf, London, a job he really enjoys and his financial skills and expertise in the regulatory environment equip him well for the role of trustee.

In December 2015 Ian confirmed his acceptance to becoming the Treasurer for Caring Matters Now. Ian oversees the Financial Administrator and all the financial aspects of the day to day running of Caring Matters Now administered by Lucy Hardwidge.

Anne Macintyre

Anne MacintyreAnne became involved with Caring Matters Now in 2001 when her daughter Erin was born with CMN.

They attended the Liverpool family day when Erin was only two months old this was where they met Jodi and became part of the support group. Anne found the group to be a great support through the difficult times, and it was then that she decided to give something back to the group and initially became a regional contact for Scotland offering help and support to families in the local area. Following great strides Anne then agreed to became a trustee of the charity and joined the board in 2007.

Anne has been employed by the Department for Work and Pensions for the past 27 years working within the Fraud Investigation Service.

Jessica Ma – Honorary Trustee

Jessica has an MBA from INSEAD and has held various financial management positions at Pepsico, Ford Motor Company and Kimberly-Clark. Jessica joined Caring Matters Now as a Trustee overseeing Finance and Funding in 2007 after her youngest daughter, Pascale, was born with a giant bathing trunk naevi. Jessica and her husband are Canadians currently residing in Kent with their two children.

Bronagh Cleland

Bronagh Cleland Bronagh lives in Ireland with her husband Adam and their 4 young children.Bronagh’s youngest little boy has CMN and the family have been actively involved in the work of Caring Matters Now for the past 3 years. Bronagh is our Ireland support contact and organises the support gatherings in Dublin and will be responsible for our Irish members of Caring Matters Now and helping us to establish our support group in Ireland. Bronagh and Adam also support our fundraising efforts and in 2014 they both attended our charity dinner dance in London along with 8 friends. As a charity we want to ensure every corner of the UK is covered with an excellent support structure. Therefore, we invited Bronagh to join the board of trustees as we work together to develop support and awareness across Ireland.

Robert Jackson

Robert JacksonRob lives in East Sussex with his wife Diane and two grown up children, Katy and Danny. Katy has CMN and the family have been involved in the work of Caring Matters Now for many years. The whole family took part in the CMN sky dive in March 2014 and they also attended the CMN charity dinner dance in September 2014. Rob has expressed a desire to be more actively involved in the work of Caring Matters Now, especially in helping the charity to develop corporate support. Rob & Diane run a financial business, so their knowledge of the ‘corporate world’ will help the charity to gain more support from big organisations. The CMN trustees believe Rob will be a great addition to the team, as he takes on the responsibility of gaining corporate partnerships for the charity.