How was the support group set up?
The Caring Matters Now support group was initially set up in 1998 by Jodi Unsworth, at the time a 17 year old patient at Great Ormond Street Hospital with extensive CMN. Jodi was born with CMN covering 80% of her body and understood the physical and emotional strains associated with the condition firsthand. Jodi and her parents provided support to those similarly affected by the condition. This was the first known and only dedicated support group in the UK. It was clear that those with CMN and their families were in desperate need of accurate information, advice and contact with others affected by the same disorder. Today, the CMN support group has over 300 families registered and 11 UK regional support contacts in operation. The charity primarily covers those living in the UK but is also happy to provide support and information to families living internationally. Individuals and/or families only need to register on-line to be on the distribution list for newsletters and to be put in touch with a support contact.