Well, as you may have already seen the Caring Matters Now Support Group has developed immensely over the past 2 years, thanks to all the hard work and commitment of the volunteer Trustees, support contacts and the CMN members. The fundraising efforts of all the CMN families has been tremendous and as a result, has allowed the great work in the CMN clinic and research programme to continue.
We have built a superb and informative website, a support network across the UK, increased the number of family days to reach as many members as possible and developed many detailed and useful support materials and fundraising tools. In addition we have collaborated with Jeans for Genes allowing us the opportunity to increase awareness of CMN and accepted a large grant from them to help continue the good work. Dr Kinsler has also managed to secure a substantial grant from the Wellcome Trust, which will allow the continuation of the research programme which is fundamental.
The work achieved to date has all been done by a team of volunteers, as well as the fundraising efforts of all the families. As the support group grows and reaches a wider audience, the administrative workload increases. So with a very kind and considerable donation from the Hoar family, who are members of the CMN support group, the decision between the family and the trustees was made to put in place a charity development officer. This person would carry out the day to day administrative tasks and develop the support group in many ways, such as, increasing support events across the UK, support all the members in their fundraising activities and increase the awareness of CMN though the media and within the medical profession.
After much consideration as to who would be the most appropriate person to fulfil the role of the charity development officer, I am pleased to announce that Lucy Hardwidge, a mum of a child with CMN, has accepted the role. The trustees and I are all very excited with the development and to have Lucy on board to dedicate her time to CMN.
Thank you all for your continued support.
A message from Lucy
My husband Anthony and I have two beautiful daughters Fay and Amy. Fay, who is now 5 years old, suffers from a Bathing Trunk Naevi which stretches from her shoulder blades, round her tummy, and down to her knees. She also has several hundred satellites all over.
I had been involved with the support group initially just fundraising and increasing awareness of CMN in the local media, but as time went on I seemed to be dedicating more and more time to CMN. I found myself with such enthusiasm for the work and knew that what I was doing could potentially help present and future sufferers of CMN and their families.
I worked in Marketing before having my second daughter Amy 18months ago. Having contacts in the printing and design field gave me the opportunity to do a bit more for Caring Matters Now and so with CBA Design and Marketing we developed a logo and since then, with the help of the other trustees and CMN members have created the newsletter, developed the school and teacher packs, fundraising packs, re-designed the booklet, created DL sized leaflets, updated the website and provided support to other families.
I have thoroughly loved every minute of my time working with Jodi and the team and am delighted to take on a more permanent and dedicated role to develop the Caring Matters Now support group further.
If you wish to contact me or have any ideas or suggestions that you think would help develop Caring Matters Now then please call me on the NEW dedicated Caring Matters Now number 07786 458883. Alternatively you can email me at [email protected].
I look forward to meeting and working with you all in the future.