Prader-Willi Syndrome Australia | Non-profit organisation

Prader-Willi Syndrome Australia

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24.01.2022 CONGRATULATIONS GEORGINA LOUGHNAN OAM We're so pleased today to share with you all the news that one of our PWSA Directors, Georgina Loughnan, has been awarded an Order of Australia Medal (OAM) in the Queen's Birthday Honours. Georgina is a long-standing volunteer in the Prader-Will community and this honour acknowledges over 20 years of service as an executive member of the Prader-Willi Syndrome Association of New South Wales, Director of Prader-Willi Syndrome Australia and... Director of the International Prader-Willi Syndrome Organisation (IPWSO). Georgina currently serves as a Director of Prader-Willi Syndrome Australia and is the professional delegate to IPWSO. In these roles Georgina has collaborated widely, contributing thousands of volunteer hours toward the writing and publishing of family, support worker and clinician educational materials regarding all aspects of support for someone living with PWS. Georgina has been an organising committee member and presenter for countless PWS conference and training sessions in Australia and the Asia Pacific. Through these volunteer roles, Georgina has enabled improved life outcomes for thousands of people living with PWS and their families across Australia and around the world. Professionally, many of you will know Georgina through her work at the Prader-Willi Syndrome (PWS) Specialist Clinic under the Metabolism & Obesity Services at the Royal Prince Alfred Hospital, Camperdown, NSW. The PWS clinic has supported adolescents and adults across New South Wales for over 25 years. Her clinical expertise covers physical activity and nutrition for healthy lifestyles, however, her contribution to individuals with PWS extends far beyond her paid hours. Congratulations Georgina for this acknowledgement of your work - it is a privilege to work with you and we thank you for your generosity with your time and expertise and your sincere compassion for all who live with PWS.

23.01.2022 Today's superhero is Mabel and she is 4 years old. This PWS awareness month, lets recognise superheroes like Mabel and celebrate the resilience and power of our PWS community. #praderwillisyndromeaustralia #PWSawareness

23.01.2022 Today's superhero is Louis and he is 1 year old. This PWS awareness month, lets recognise superheroes like Louis and celebrate the resilience and power of our PWS community. #praderwillisyndromeaustralia #PWSawareness

22.01.2022 SHARING HOPE A great story this evening on PRIME7 News Central West featured our PWSA Vice President Justin Johnson, his wife Libby and their beautiful daughter Mabel. Great to see the the work that Mabel is doing and the family’s efforts to raise funds to assist all in the PWS community through the Prader-Willi Research Foundation Australia appeal - Finding Fifteen.... Finding Fifteen is the Foundation’s major appeal and you can read more about it, and donate right here: https://www.mycause.com.au/events/praderwilli

21.01.2022 SAVE THE DATE This Sunday, 28 June at 8pm, we're pleased to present the first of our Prader-Willi Syndrome Australia Sunday Sessions. These free sessions, held via Zoom, are going to focus on a variety of topics of interest to all living with Prader-Willi Syndrome. To kick off our program, we're so pleased to welcome Professor Tony Holland, President of the International Prader-Willi Syndrome Organisation (IPWSO) and Emeritus Professor in the Dept of Psychiatry at the Univers...ity of Cambridge. Tony will give us an overview of COVID-19 for people living with PWS and a brief update on IPWSO's international survey on the effects of COVID-19 for people living with PWS. Tony will be in conversation with our President, James O'Brien and you'll hear an update on both IPWSO and PWSA. There'll also be opportunities to ask questions of our speakers. This event is free but you must register - so save the date and we'll be circulating registration details shortly.

19.01.2022 KNOWLEDGE IS POWER - AN OPPORTUNITY TO PARTICIPATE IN AN INTERNATIONAL SEMINAR Malaysian Prader-Willi Syndrome Assoc have announced their Prader-Willi Syndrome Malaysia National Seminar 2020, with opportunities to participate online to share global best practise. Our PWSA Chairman, James O'Brien and Board Director Georgina Loughnan will both be delivering keynote presentations as part of this event. James's presentation will focus upon support for people living with PWS in ...Australia; Georgina's presentation will focus on the impact of PWS on the adolescent. The objective of this seminar is to unravel the insights of Prader-Willi Syndrome and empower us with global best practise. Prader-Willi Syndrome is a very much misunderstood disorder due to its multi-faceted complexities. Knowledge is not power. It is potential power. Let's harness this potential power together for better action. At a time in the world when many people feel isolated here's a great opportunity to share support, knowledge and information. Head to the website for more information: https://www.racexasia.com//prader-willi-syndrome-malaysia-

16.01.2022 OUR THOUGHTS ARE WITH YOU To the PWS families affected by the new lockdown measures in Melbourne and across regional Victoria we send our best wishes. With some additional restrictions coming into force today, we know it can be difficult for people living with PWS to accept another change in routine. Stay safe and please reach out to Prader-Willi Syndrome Australia (PWSA) if you need to talk or assistance navigating these challenging times. We are all in this together!

16.01.2022 Today's superhero is Ricky. This PWS awareness month, lets recognise superheroes like Ricky and celebrate the resilience and power of our PWS community. #praderwillisyndromeaustralia #PWSawareness

15.01.2022 SUNDAY SESSIONS - 26 JULY - ONLINE at 8PM Join us tonight for a great parenting discussion - with Maria Punturerio and Georgina Loughnan. How to join in? - send us a message (or email us at [email protected]) and we'll pass on the zoom link.

15.01.2022 INSPIRATION & MOTIVATION We want to share with you a wonderful range of short films that are available for viewing right now as part of the annual Focus on Ability Short Film Festival Now in it's 12th year, this event, which was initiated by NOVA Employment reaches an international audience and is growing every year. ... The films themselves, at a maximum of five minutes long are simply wonderful, personal, creative, hilarious, infomative and touching stories crafted by filmakers with a disability who are simply bursting to tell their story. This festival is evidence of the awesome power of film to challenge people's fixed beliefs and perceptions about the lives and abilities of people with disability around the world. Last year, this festival was seen around the world, with 244 films entered from 26 countries. In 2019 and pre-Covid-19 films were seen at screenings in Sydney, Los Angeles, New York, Melbourne, Brisbane, Adelaide, Fremantle, Auckland, and Malawi. This year, there are 19 countries represented, with 267 entries. Congratulations to everyone who is involved - the filmakers and their supporters. We encourage you to view and share these films - and to leave some encouraging comments for these talented filmakers - we think they're all superheroes. https://www.focusonability.com.au/

13.01.2022 A LOVELY OPPORTUNITY FOR PWSA FAMILIES IN SYDNEY Merlin Entertainments have been in contact with PWSA to advise of an opportunity for families to visit both SEA LIFE Sydney Aquarium and WILD LIFE Sydney Zoo for a quiet, 'Sensory Session.' This is an opportunity to visit these facilities when they are otherwise closed to the general public and a great opportunity for children living with PWS to enjoy these beautiful facilities in a calm, relaxed environment. The next sessio...n offered is this Wednesday, 22 July and entry is strictly limited via RSVP only - to ensure that the sessions are held quietly and without crowds for the maximum benefit of the special visitors. Details of the session times available are in the graphic below. Interested? - either send a message directly to the organisers (from the graphic) or drop us a private message via Prader-Willi Syndrome Australia and we will ensure you're put in touch with the organisers. Do you know of other similar sessions like these or does your business offer special sessions for children with a disability? Let us know and we're happy to share this information which can be so valuable for families living with PWS. Thanks to Merlin's Magic Wands and the Merlin Entertainments Group for this opportunity.

11.01.2022 REGISTRATIONS OPEN Click on the link below to register for the first of our Sunday Sessions, being held this Sunday 28 June, at 8pm via Zoom. Stay up to date with the very latest information in this COVID-19 environment, and hear about what's planned for future "Sunday Sessions" - we're keen to hear your thoughts. International Prader-Willi Syndrome Organisation (IPWSO)... Register here: https://socialpws.typeform.com/to/xZpfmdOt

08.01.2022 SUNDAY SESSIONS 26 JULY - SAVE THE DATE We had a great session tonight for our very first "PWSA Sunday Session" with informative and interesting presentations and discussions. We also had the privilege of welcoming Jean Phillips-Martinsson to our session: founding member and honorary president of International Prader-Willi Syndrome Organisation (IPWSO) She had some great insights to share. Make sure you don't miss the next one - sign up today to become a FREE member of PWSA... and ensure you receive information about all our forthcoming events and activities. If you missed out on the COVID-19 + PWS presentation tonight - we'll shortly be sharing videos of the key presentations through our website and social media platforms. To become a PWSA member click here: https://socialpws.typeform.com/to/NaFtUD

05.01.2022 SHARING HOPE We're so very pleased to have received this news earlier today from Levo Therapeutics, Inc. who have released positive news on a trial to reduce hyperphagia for people living with PWS. Levo Therapeutics is a biotechnology company dedicated to using genetic insights to advance treatments for Prader-Willi syndrome and related disorders. You can read further details in the detailed post from Levo via this post from our colleagues at Prader-Willi Research Foundation ...Australia There is still a path to travel regarding approval needed through the Therapeutic Goods Administration of Australia (TGA). We'll keep you posted as to progress. Good news! #PWSAbrighterfuture

05.01.2022 Today's superhero is Ben and he is 13 years old. This PWS awareness month, lets recognise superheroes like Ben and celebrate the resilience and power of our PWS community. #praderwillisyndromeaustralia #PWSawareness

04.01.2022 FACEBOOK LIVE CHAT: STILL HUNGRY FOR A CURE! 5pm AEDT time (NSW/Vic/ ACT) and 4pm QLD time and 2pm AWST (WA) Hi everyone! ... All are welcome to join the Malaysian PWS Association, TODAY, Saturday 31st Oct 2020, Saturday, 2.00pm via Facebook live chat on Malaysian PWS Association fb page for a "chat" session with Mr Azhar, President of PWSAM & Mr James O'Brien, President of Prader-Willi Syndrome Australia & Vice President of IPWSO! Topic: "Still Hungry For A Cure Questions are welcomed! Feel free to ask in BM/English. See you all soon!

04.01.2022 CALL FOR APPLICATIONS FOR MEMBERSHIP - PWSA ADVISORY BOARD We've established a PWSA Advisory Board - a group of people living with PWS who will inform the work of PWSA. We've called this group "Our Way of Life Australia" or OWLA. Applications are open now - and close on Friday 4 September. ... For interested potential members, we'll be holding informal Information Sessions on Tuesday 25 August and Tuesday 1 September at 4pm via 'zoom.' Does this sound like you or you'd like more information? email us at [email protected] and we'll send you the Application Form and details of the Information Sessions.

03.01.2022 JEANS FOR GENES DAY On a day where we've been able to share some news of new research into effective drug treatments for PWS, we wanted to share our support for Jeans for Genes Australia This is their major fundraising day, held on the first Friday in August each year. 1 in 20 children is born with a birth defect or genetic disease. Jeans for Genes proudly supports Children's Medical Research Institute where scientists are searching for treatments and cures so kids can go ...back to just being kids. Funding for medical research is vital - because these breakthroughs may assist to make life easier for everyone living with Prader-Willi Syndrome. We know their volunteers are finding it tough, as are many charities this year - as we cannot be out raising funds or raising the profile of this work, so if you're able to assist, please jump online and make a donation. We wish them every success with their important work.

02.01.2022 SUNDAY SESSIONS - TONIGHT 8pm An important conversation about COVID-19 and the care and support for those living with PWS. Click on the link to register - https://socialpws.typeform.com/to/xZpfmdOt

02.01.2022 SUNDAY SESSIONS - 26 JULY 8PM We're getting ready for our next 'Sunday Sessions' presentation and forum. Our focus this time is "Parenting the Younger Child with PWS" - with a presentation by our PWSA Board Member and International Prader-Willi Syndrome Organisation (IPWSO) Parent Representative, Maria Punturiero. Our session will be anchored by our Vice President Justin Johnson and we'll also have expert advice from Georgina Loughnan, PWSA Board Member and PWS professional. ... It's going to be a great discussion - and a great chance for you to ask questions, tell us what you need to assist you and hear how you can get involved with Prader-Willi Syndrome Australia How to join? Send us a private message or email [email protected] and we'll send you the Zoom link to our meeting. It's free - and everyone is welcome. We hope to see you there.

01.01.2022 PRESTO - OPPORTUNITY FOR YOUNG PEOPLE WITH PWS Here's a great opportunity for young people (aged 13+) to be involved in a fully funded clinical exercise trial. We've been invited to share with you all this clinical trial being conducted by La Trobe University titled "Improving muscle strength in young people with PraderWilli syndrome: a phase II randomised trial". The trial Chief Investigator is Prof Nora Shields.... Participants are currently being sought from NSW and QLD, with Victoria to be included as COVID-19 restrictions ease. If you live in another State, this may also be considered. Participants are being offered fully funded, twice weekly exercise sessions over a course of 24 weeks. Full details are included in the post below. Please share with people living with PWS and their families who will benefit from this important study

01.01.2022 Today's superhero is Belle and she is 18 years old. This PWS awareness month, lets recognise superheroes like Belle and celebrate the resilience and power of our PWS community. #praderwillisyndromeaustralia #PWSawareness