We’ve joined together to raise money for Caring Matters Now by taking on the ultimate challenge, Mt. Kilimanjaro! At 5,895m, Mt. Kilimanjaro is one of the largest volcanoes ever to break through the Earth’s crust. The goal is to reach the summit!
This team of 19 dedicated and enthusiastic trekkers are all aiming to conquer the world’s highest freestanding mountain and raise a substantial amount of money to fund a year’s research into CMNS.
Congenital Melanocytic Naevi Syndrome (CMNS) presents as moles at birth but unlike normal moles can cover up to 80% of the body. The affected skin is dark brown in colour, tends to be hairy and can be very loose, soft and more wrinkled than normal skin, tearing easily if traumatised. Around 20% of children with large CMNs have abnormalities in neurodevelopment, sometimes caused by abnormalities in the brain and/or spinal cord. Malignant melanoma of the skin or brain is also a recognised complication of this condition, and although the overall rate of this is much lower than was previously thought it may still be as high as 10-15% in those with the largest CMN.
The challenges of growing up with a visible difference can be significant. The obvious psychological and social developmental challenges for children due to appearing different to others can be more devastating than the physiological challenges. Caring Matters Now is the only UK charity that provides dedicated support to those affected by Congenital Melanocytic Naevi Syndrome (CMNS).
The support group has three main aims which are:
- To support those affected by CMNS
- To raise awareness about CMNS
- To raise funds for the CMNS research
Today, the CMN support group has over 270 families registered and 12 voluntary UK regional support contacts in operation. They host family days across the UK to give those with CMNS, their parents and siblings the opportunity to get together. We are also a significant funding source for the research programme at Great Ormond Street Hospital in London.