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2 | InTouch WINTER 2023 NEWS ROUNDUP Now back in stock! Dinosaur Mac is back! The wonderful book, Dinosaur Mac’s Discovery was written by a Mum in our community with a son who has Duchenne muscular dystrophy (DMD). The book, written with love and strength, first launched in 2014 and is about a young boy who loves to play and run around but can’t manage to do everything he wants to do because his muscles get sore and tired. The amazing author, ErinWebb says it “follows a boy through the beginning stages of this condition. He wears a dinosaur tail everywhere which follows him on some of his ‘adventures’ like physio, Echocardiograms and so on. It is meant to be heartwarming, funny, while being real, and accurate.” Erin’s incredible not-for-profit book has raised thousands of dollars in Disability Connect We’ll miss you Pip! Disability Connect runs a Parents Support Group meeting via Zoom every Monday from 7.00 – 8.00pm. This is open to anyone seeking advice or support for parenting, upcoming Needs Assessments, starting or leaving school and anything in- between. Philippa McLean, MDA Central Branch Community Co-ordinator, has left the Association after 2 ½ years. Pip was a much-loved member of the Central Region team. Her enthusiasm and dedication will be missed by us all, and her Central members. We wish her all the best for her future endeavours! funding from all over the world since it was first published and has helped countless boys and their families on their own journeys with DMD. MDANZ are so grateful to Erin for all her hard work and dedication in not only writing this book, but for the hours she has spent fundraising for DMD in New Zealand. Erin has kindly donated the final 500 books to us to help boys with Duchenne muscular dystrophy and MDANZ members with neuromuscular conditions. To raise funds for the Bradley Jenkin Memorial Fund we are selling copies for $10 each. To purchase your copy, please email info@mda.org.nz with Dinosaur Mac’s Discovery in the subject line. Does your child have a long- term health condition? We are surveying parental understandings of sleep problems in children with long- term health conditions and would appreciate your time. A team of researchers and medical professionals, including Professor Laurie McLay, from the University of Canterbury are interested in gathering more information about parents’ understandings of their child’s sleep problems. They are currently seeking parents of children who have a long-term health condition (i.e., an ongoing or recurring [> 3 months] physical health condition and any type of sleep problem (e.g., difficulty falling asleep, night wakings, daytime sleepiness, sleep apnea). If this is you, and you did not complete the survey last year, we would appreciate you completing this 10-15 minute survey. The survey can be accessed by following this link: https://tinyurl.com/598npzst All responses to this survey will be completely anonymous, and do not require you to include any identifying information. If you have any questions, or would like further information, please contact: Laurie McLay (PhD) Te Kaupeka Oranga – Faculty of Health University of Canterbury Phone: (03) 3693522 Email: laurie.mclay@canterbury.ac.nz