CostelloKids

July 14, 2016

CostelloKids charity is a parent to parent support group which shares information about Costello Syndrome with parents of children diagnosed with it and health experts from all around the world. Their aim is to give everyone a much clearer understanding of the syndrome and identify the best places for the children to receive treatment. They provide a support network in which families can share their stories about experiences with the syndrome and support each other as they will have a mutual understanding. Costello Syndrome is a rare syndrome which is characterised by multiple congenital anomalies including dysmorphic craniofacial features, cardiac defects, ectodermal and musculoskeletal anomalies, failure to thrive and developmental delay, and cancer. The chairty was founded by Colin and Cath Stone and they both run the charity. They have families all around the world who they offer support to, and a board of expert Doctors who help people cope with Costello Syndrome. There are only 500 people world wide who are suffering with this, and they work with everyone to help them as much as possible. As it's such a small charity they don't receive any funding and therefore it's up to Colin and Cath to hold fundraising events and raise money to keep the charity running. They hold a bi-annual conference and on 28th - 30th October they did this at the Hilton Hotel in Manchester. The event is for families all over Europe and England and over the three days they have a Buffet, Medical day which involved a lot of Doctors giving speeches, and finish it off with a party for all of the families. This year they had 130 attendees which was double to what they had last time! They also used this event for some fundraising, and Cotyso helped out by donating a voucher for a recording experience which was auctioned to go towards their funding. We wish CostelloKids all the best in their future and hope it becomes a well recognised charity as Colin and Cath work very hard to raise awareness - to find out anything else and see how you can help visit their website

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