Information seminar / AGM: Tuesday 28 May 2013
Thanks for those who attended CleftPALS Victoria’s Information Seminar & AGM.
Many thanks to the speakers who making it a fascinating and informative evening. The presentations are attached below. These are presentations not handouts so for those who weren’t able to attend some context may be missing.
And huge thanks yet again to Evelyn and Nic, our dedicated joint presidents, for planning and running this event.
Strategies to Deal with Visible Difference
What supports are available to families and young people affected by cleft?
Dr Alice Morgan, Senior Clinical Psychologist, with contributions from Dr Kate le Maréchal, Dr. Natalie Colman and Dr. Sophie Burgess
Cognitive & Learning Abilities of Cleft Children
Does the brain of a child with cleft develop differently? How do we access psychology counseling services?
Dr Annette Da Costa, Clinical Neuropsychologist
OzCleft Study Update
Has the OzCleft team uncovered new genetic causes of cleft lip and palate?
Dr Nicky Kilpatrick, Senior Research Fellow
Run Melbourne – are you in?
Join the CleftPALS Vic team for Run Melbourne on 21 July, or sponsor one of our super runners!
Fundraising for CleftPALS helps us provide feeding equipment to hospitals, help families with information, get older kids together in the Cleftstars program and share information with medical professionals.
Our Run Melbourne team page is here.
Easter Eggstravaganza – thank you!
Thanks for coming to the most popular CleftPALS event of the year. And thanks to the CleftPALS Committee, the Easter Bunny (aka Jarrod) and everyone who donated raffle goods and brought extra eggs along to make this another super CleftPALS Vic event.
My daughter’s favourite Zoo animals were “the lions, the zebras and the giraffes, and I liked the Easter bunny best!”
Family picnic: Sunday 11 November 2012, Diamond Valley
Thank you for joining us at this wonderful day out! check FaceBook for pictures
CleftPALS Vic 2012 AGM
We had a great day on Saturday 12 May meeting other families and finding out more about cleft support in Victoria.
Congratulations to new and re-elected Committee members.
‘APPEARANCE MATTERS’ symposium, Saturday 11 February 2012
‘Appearance Matters’ was at the Royal Children’s Hospital (Melbourne) on 11 February 2012, bringing together medical and health professionals, cleft-affected families and young people.
This one-day symposium is being jointly promoted by CleftPALS Victoria and OzCleft. Registration is only $20 for adults, and free for young people / Cleftstars. Lunch / refreshments are included.
9.30 Welcome from Assoc. Prof. Nicky Kilpatrick
9.45 What do we know about psychology of appearance? – Professor N Rumsey
11.15 Body image – Dr Phillippa Diedrichs
12.15 Young people and appearance – Dr Heidi Williamson
2.00 Join one of 3 interactive workshops facilitated by the Centre for Appearance Research (CAR) team:
- For young people with a cleft: include an introduction to new online intervention YP Face
- For parents of young people with a cleft: discussion forum, strategies for parents to support their children
- For health professionals: discussion on the psychology of appearance how to influence the care agenda to better meet the needs of young people with a cleft and their families
4.00 Plenary discussion - The Centre of Appearance Research, University of the West of England, United Kingdom
We hope to see you there. We warmly welcome you all to attend and to complete the registration process to ensure a place at this event. cleft workshop registration form
If you have queries please contact
- Supriya Raj, OzCleft Project Manager on 9936 6532 or email@example.com
- Evelyn Culnane, Co-President CleftPALS Victoria on 0409 512 855 or firstname.lastname@example.org
The Centre for Appearance Research (CAR) is a multi-disciplinary research centre based at the University of the West of England, Bristol, UK. CAR strives to make a real difference to the lives of the many hundreds of thousands of people with appearance-related concerns both in the United Kingdom and across the world. CAR acts as a focus and centre of excellence for psychological and interdisciplinary research in appearance, disfigurement, body image and related studies.
CleftPALS Vic is the support group for children and families affected by cleft lip and palate. We are a group of volunteers – mostly parents and cleft-affected adults – who understand what parents and families are going through, and want to help.
OzCleft is an NHMRC funded genotype:phenotype study aimed at exploring the genetic aetiology of clefting, lead by Professors Ravi Savarirayan (Victorian Clinical Genetics Service) and Nicky Kilpatrick (Department of Dentistry), Royal Children’s Hospital.
Professor Nichola Rumsey is Co-Director of the Centre for Appearance Research (CAR). Her portfolio of ongoing health service focused research projects currently includes: meeting the psychosocial needs of people affected by cleft, assessing quality of life in people with appearance related concerns, establishing the factors associated with resilience in coping with visible difference, assessing the psychosocial needs of burn injured patients, the implementation of changes to the provision of care for patients with a range of disfiguring conditions and the psychological consequences of whole face transplantation.
Dr Diana Harcourt is Co-Director of CAR. Her particular research interests focus around the psychosocial impact of visible difference, in particular the psychosocial needs of young people with burn injuries and their families, women’s experiences of breast reconstruction following mastectomy, the psychosocial impact of changes to appearance due to chemotherapy, adolescent cancer patients’ experiences of changes to appearance and interventions to support people with appearance concerns.
Dr Phillippa Diedriches is currently a VTCT Senior Research Fellow at CAR and is leading a programme of research focused on developing strategies which aim to create an environment that values diversity in appearance. Her research interests include health psychology, the sociocultural context of health, body image, promoting health at every body size, the mass media and health, the stigmatisation of overweight and obesity, and eating disorders.
Dr H Williamson is currently as a Research Fellow at CAR. Her research interests include; health psychology, appearance research and visible differences / disfigurement, particularly among young people with cancer and women with breast cancer, and developing interventions to support young people distressed by an altered appearance including cleft.
Movie night fundraiser!
8 to 14 November 2011 is Cleft Awareness Week. Thanks for bringing out family and friends along to a great night out in support of CleftPALS.
Full update on a great night out in our next newsletter.
CleftPALS National AGM came to Melbourne – September 2011
What a great meeting! it was fantastic to meet so many people and hear about latest happenings in cleft research and treatment.
- Cleftstars Mark and Alyssa tell us about their trip to China with Operation Smile
- Andrea Verhoeven, Senior Speech Pathologist
- Dr Surpiya Raj, Project Manager, Ozcleft
- Dr Chris Bennett, Plastic Surgeon
Full update in the December CleftPALS newsletter.
CleftPALS Vic AGM 2011
The CleftPALS Victoria AGM was held on Tuesday 14 June at the Royal Children’s Hospital, Melbourne. It was great to see friends old and new. The new committee is full of energy and ideas and looking forward to a year of support, sharing, research, lobbying and fundraising in the cleft cause.
Easter Eggstravanga at the Zoo
Such a success in 2011, we’re planning to make it a regular event! thanks to all families who came and helped. Over 150 of us made it our most successful event ever. Well done Evelyn and Alida for organising and Jarrod for putting on the bunny suit again.
Thanks for coming to the Gala Dinner
The CleftPALS annual Gala Fundraiser took place on 2010 on Cup Eve, in the form of a three course dinner at The Metropolitan Hotel in the city. Filled to capacity, 115 people attended the event, and enjoyed excellent food, wine and beer, gorgeous floral arrangements by Hopetoun Garden Florist, and a spectacular Jazz Trio for entertainment.
The two key speakers of the evening were
- Professor Ravi Savarirayan, who discussed his passion for genetics and his OzCleft project currently underway, and
- Esteemed plastic surgeon David Chong, who took us through his journey from becoming interested in medicine to his Operation Smile missions, wonderfully enhanced by his love of photography and snapshots from around the globe, as well as a touching clip of a little girl shot on his most recent mission to Brazil; there were very few dry eyes in the house after that one!
Goodies for silent auction were snaffled by those who know a good deal when they saw one, and the verbal auction held by Tim Lynch of Ray While Real Estate Moorabbin, offered some truly fabulous lifestyle products and vouchers, all generously donated by sponsors.
After the delicious desserts and cheeses, donated by Unger Catering and Menora Foods respectively, and one final set by our talented musicians, the night concluded.
The Gala Dinner raised approximately $7,500.00 to be used in supporting cleft affected kids and families and research! so thank you very much and a big WELL DONE to all those involved in the organisation of the night, our sponsors and donors, and of course, the attendees, without whom the night would not have been possible! Looking forward to next years event and seeing you all there!
CleftPALS Victoria – Event Coordinator
Please check out the list of Gala dinner sponsors and thank them for supporting us
Thanks for coming to the CleftPALS Information Seminar/ AGM 2010
The CleftPALS Information Seminar & Annual General Meeting was held on Tuesday 11th May with over 60 attendees and four distinguished guest speakers:
· Dr Julie Reid (speech pathologist specializing in cleft lip and palate and feeding issues)
· Mick Martyn (former AFL North Melbourne footballer, businessman, father of 3 and born with a cleft lip and palate)
· Dr Heather Cleland (Director of Plastics department, RCH, and Director of the Burns unit, Alfred Hospital)
· Associate Professor Nicky Kilpatrick (recently Director of Dentistry, RCH)
Julie’s presentation highlighted common speech difficulties that children with cleft lip and palate may experience and different strategies which are employed to assist with these issues. Her presentation was highly informative and of great interest, particularly to many parents of young or unborn children in our audience. Many attendees took the opportunity to engage in discussion with Julie following her presentation, so that she could share her insights further. Julie, as always, was wonderfully generous with her time.
Mick’s presentation gave us a ‘window’ into his life - his trials and tribulations growing up with a cleft lip and palate within a big family, the rigorous demands of being an elite athlete and as a survivor of the Bali bombings. His presentation was honest, heartfelt and entertaining, captivating the entire audience when he held the floor. His personal story was truly inspirational.
Heather presented current data on the occurrence of cleft lip and palate across Victoria and the developments within the Plastics department at the Royal Children’s Hospital. Among the developments presented were the new NAM clinic and the arrival of the new parent information booklets at the Royal Children’s Hospital which now consists of a series of separate informative brochures.
Nicky presented on the new OzCleft research project. Her presentation was highly engaging and generated much interest, enthusiasm and discussion. The OzCleft project will research familial genetic characteristics which may contribute to the occurrence of cleft lip and palate. During the study, family members are invited to take part in a general dental and medical assessment, a speech recording, a 3D photo session and an ultrasound session.
CleftPALS holds monthly Playdate / Morning Teas, where you can meet other parents and have a chat while the kids run around. See the “Playdates” tab for more information.
We also host regular events such as family fun days (recent venues have including Melbourne Zoo and Luna Park), and trivia nights. Please let us know what kind of events you would like, and if you are interested to help with events.