Please see below if you would like a holiday!The wonderful people over at Cowries, St Merryn, Padstow, have kindly donated The Sandcastle Trust a week’s holiday at their beautiful dog friendly, modern and spacious three bedroom house located in the heart of St Merryn village on the North Cornish coast. There is access to a great private playpark and the property is close to pubs, shops, takeaways and excellent restaurants, and lively Padstow is just three miles down the road.www.cowriesstmerryn.co.uk/The week available is 10th - 17th March and Cowries would like this holiday to be enjoyed by a family affected by a rare genetic condition (or suffered a bereavement as a result of a genetic condition). *Please note that this property is across two floors, has a small step into the entrance and two steps into the garden and so is not wheelchair friendly.* If you would like to nominate your family to receive this wonderful break then please do the following:* Like The Sandcastle Trust and Cowries St Merryn pages.* Email info@sandcastletrust.org and tell us about the person in your family with the rare genetic condition; Their name, age and diagnosis and how their condition affects them. * Please provide the names and ages of immediate family who will also be coming on the holiday.* Please attach to the email a copy of a recent doctor/hospital letter that confirms their diagnosis.* Please visit the Cowries St Merryn website to ensure that the property is suitable for your family and check that you are available to take the holiday between 10th - 17th March 2023.Nominations will close on Saturday 11 February.PLEASE SHARE THIS POST AS IT MAY REACH A FAMILY WHO COULD BENEFIT FROM THIS LOVELY BREAK. ... See MoreSee Less
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This week is children's mental health week. Our children's mental health is of upmost importance to us and we want to help the parents and carers in our community to support our children living with a PTEN diagnosis.As part of this support we would like to set up a focus group of parents / carers to discuss ideas of different resources the charity could create to help you to support your family. If you are interested in getting involved then please do comment below or email me at kelly@ptenuki.org. The focus group will be held on March 15th at 7pm. I look forward to hearing from you! ... See MoreSee Less
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To confirm tonight will now start at 19:00! Don't miss out and sign up here: www.eventbrite.co.uk/e/pten-power-hour-the-pten-patient-registry-tickets-512880458257?fbclid=IwAR... ... See MoreSee Less
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