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News and Research |
| Do you have a cleft affected child aged 4-7? Monash University is investigating parent and sibling perceptions and experiences of living with a child between the ages of 4-7 years-old who have a cleft lip and/or palate. The study will involve you giving up around an hour of your time to discuss your experience and all interviews are confidential. Study results will contribute to the current knowledge base and be used to better inform health care services of the needs of cleft lip and/or palate families. If you would like to find out more about this study, access the consent form, or arrange an interview time, please contact Rebecca Robinson via email rlrob3@student.monash.edu or phone (03) 9928 8271, or review the Explanatory Statement. Kim Ran Melbourne for CleftPALS! – 2011 Kim Watson completed Run Melbourne in July 2011 for CleftPALS. Kim was shocked to hear of the struggles of new parents of cleft affected babies and how hard it can be to feed a cleft affected baby if the maternity hospital doesn’t happen to have specialised feeding equipment such as a Special Needs Feeder or squeezy bottle on hand. She says “feeding my baby was hard enough – and he wasn’t cleft affected. I can’t believe that in Melbourne, in 2011, some babies are being feed with teaspoons and new mothers given the wrong advice.” Kim’s aim is to help us get information and specialised feeding equipment to maternity hospitals in Victoria, to ensure new cleft babies can be fed and parents supported. Kim raised $1155 for CleftPALS Vic. Wow – you’re amazing! The Committee are now looking at how to best employ the funds best in use to get information and feeding equipment to hospitals. Thanks to everyone who donated in support. Inside the Human Body Fascinating TV show illustrating how faces are formed. Latest update from Graeme Wallace, cleft issues researcher. Research into the cause of Cleft Lip and Palate (CLP) has been undertaken for many years and yet no definitive cause has been determined. This means that there is no one thing that a woman can do or take which will at this point in time prevent a CLP in her developing child. Graeme Wallace research Drug linked to birth defects Warnings on a migraine and epilepsy drug taken by pregnant women could be strengthened after it was linked to an increase in birth defects. The Therapeutic Goods Administration is reviewing new data on the use in pregnancy of antiepileptic topiramate. US data has found an increased risk of cleft lip and cleft palate in infants exposed to topiramate during the first trimester of pregnancy. Graeme puts a call out: Southern Cross University research project Graeme Wallace is researching on clefts. He says “We are still looking for both controls and also mums who have a child with a diagnosed cleft. If you are aware of any other mums of cleft kids wanting to help with research or who are pregnant I would appreciate it if you could point them in my direction.” Contact Graeme on graemew@bigpond.net.au or 0418 248 983 To read about Graeme Wallace’s most recent research project about the possible causes of Cleft Lip and Palate, please email cleftpalsvic@gmail.com and we’ll email you the full paper. Courtney’s precious smile Check out this recent clip from the wonderful David Chong from RCH. It’s beautiful. http://www.youtube.com/watch?v=4nUkE1moT-g Research: Southern Cross University Pregnancy Research 23 September 2010 We are conducting a study to try and determine the cause of cleft lip and palate in children. This birth anomaly affects one in every 600 children born in Australia. We need your help and hope to involve pregnant women to participate in this research who are between 12 and 26 weeks into their term, and who have had their first ultrasound. If you would like to participate or have any further enquiries, please contact: Graeme Wallace on 0418 248 983 or graemew@bigpond.net.au Find out more about Graeme Wallace study Research: Cleft Learning and Development 30 July 2010 CleftPALS Victoria are proud to support exciting new research being conducted by The Royal Children’s Hospital and Murdoch Childrens Research Institute. This research aims to find out more about the thinking, learning abilities and brain development of children with nonsyndromic cleft lip and/ or palate. While many children with cleft cope well academically, some experience learning difficulties. Some also have problems with attention, getting organised, multitasking, or mood and social relations. We want to find out more about the learning and development of children with cleft. We also want to look at how this may relate to the way the brain develops in children with cleft. Know a cleft child aged 7 to 16? Find out more: Learning and development research, Research study recruitment letter The Jigsaw Foundation 15 June 2010. A wonderful cause – and have a look at the video featuring our very own Evelyn and lovely Jarrah! Ozcleft update! 15 Feb 2010. Ozcleft is an exciting new project investigating the role of genes in clefts of Update from the Ozcleft team: Following the successful launch of the OzCleft project at the CleftPALS Victoria AGM on May 11th we are pleased to report that we held our first clinical data collection session on May 15th when one lovely family agreed to help us work through the logistics of how to complete a series of examinations (medical, dental, speech, xrays, 3D-photography and ultrasound) on 5 members of one family in one session. The session went very smoothly and despite the large amount of information collected the time flew for all involved. We have received great feedback from both the clinicians and the participants (most specifically which muffins were OK and which ones should not be bought again!). We are now revising some of our processes (and choice of muffins) in readiness for the next data collection session which will be in a few weeks time. We are excited by the response we have already had to this project with 9 families having contacted us wishing to participate and thank CleftPALS for their strong support. For further information contact Supriya Raj on 9345 4109 or ozcleft@mcri.edu.au Article from The Australian, 5-6 February 2011: GENOME anniversary Article “Cleft Lip and Palate Explained” – from My Child magazine, September 2009.
Badu’s short life has been defined by her cleft lip, considered a curse by many villagers. Her twisted mouth affected her eating and her speech. Her parents feared it would prevent her marrying. Read The Age article here. Smile Pinki! Pinki had been too ashamed to venture outside her house in Mirzapur because of her cleft lip. In the early years, even her mother used to flinch when she looked at her daughter’s face. Watch the documentary trailer here. 5 October 2008: Scientists have pinpointed a flawed gene that is a major cause of cleft lip. A single change in a sequence of a gene called interferon regulatory factor 6, or IRF6, boosts the risk of cleft lip by 18 percent. Abstract from article: Do you shop at a Ritchies Supermarket? CleftPALS are part of their Community Benefit program. Scan your keyring and help our fundraising! to get a Ritchies CleftPALS keyring contact us. |
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