Prader-Willi Research Foundation Australia | Non-profit organisation

Prader-Willi Research Foundation Australia

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25.01.2022 Hear from Kath, founder of Prader-Willi Research Foundation Australia. Thank you so much to everyone who had shared, donated or fundraised. Let's keep going! www.finding15.org.au

25.01.2022 We are more than 85% of the way to our ultimate goal! Be a part of making a HUGE difference to the lives of children and people with Prader-Willi syndrome by funding vital research and treatments. Every dollar donated creates a great impact into the future of people diagnosed with PWS. ... DONATE TODAY: www.finding15.org.au #finding15

25.01.2022 Help us fund treatment for the most common genetic cause of obesity in children, Prader-Willi syndrome. TODAY is the Finding 15 Giving Day, a day dedicated to raising vital funds into research and treatment for PWS. Help us to FIND 15 to brighten the futures of people diagnosed with PWS. DONATE TODAY: www.finding15.org.au ... #finding15

22.01.2022 EXCITING NEWS - AUSTRALIA’S FIRST CHROMOSOME 15 BIOBANK ANNOUNCED! For the first time in Australia a purpose-built Biobank will be established to store tissue samples and clinical data for research into rare genetic diseases caused by changes to genes on Chromosome 15, including Prader-Willi Syndrome (PWS) and Angelman Syndrome (AS). The Biobank initiative has been made possible by over $150,000 in funding. Importantly a $65,500 competitive grant awarded by Laurence G. and Je...an E. Brown Charitable Trust through Perpetual’s IMPACT program to PWRFA and Professors Godler and Amor (as principle investigators) underpins the project. In addition $25,000 from donors to the PWRFA was granted to co-investigators Professors Godler and Amor, with $25,000 in kind contribution from Professor Godler’s laboratory and $45,000 for a 2 year fellowship was awarded by FAST to Dr Emma Baker a talented postdoc within MCRI. The Chromosome 15 biobank will be constructed over the next 2 years and will be housed at MCRI Please see link on our website for the full details: http://praderwilli.org.au/blog

22.01.2022 **Invitation to participate in a survey** Latrobe University is inviting the PWS community to participate in an international survey on the impact of COVID 19 on individuals with intellectual and developmental disabilities, their families and service providers. It can be completed by family members of people with intellectual disabilities, direct support workers or others involved in service delivery or advocacy with people with intellectual disabilities. You must be at least... 18 years to participate. The survey will take about 25 minutes to complete. Closing date 20 September 2020. Please see the link below to participate: https://www.ucd.ie//ucdcentrefordisabilitystud/covid19idd/

18.01.2022 CARE-PWS CLINICAL TRIAL UPDATE A message below from the Levo team (Carbetocin Trial). If you have any questions, please reach out to your site contact: Dear PWS community,... We’re writing to let you know that we’ve made the difficult decision to close enrollment in the CARE-PWS study due to the COVID-19 pandemic. For the sake of clarity, all currently enrolled participants will continue in the study as planned. To any families who were in screening or contemplating participation when enrollment was paused, we understand and share in the disappointment that this news may bring. We are grateful for you and all who showed an interest in this study. We look forward to sharing the results of the study with you later this year. In the meantime, I hope all of you and yours can stay safe and healthy. , Sara and Team Levo

18.01.2022 RESEARCH UPDATE Levo Therapeutics has released exciting topline results overnight for their CARE-PWS clinical trial which demonstrated the drug Carbetocin significantly reduced hunger (hyperphagia) and anxiety for people with PWS. This is the trial that PWRFA worked to bring to Australia and was commenced last year. Hyperphagia is one of the more crippling symptoms of Prader Willi Syndrome, it is a severe health risk and significantly impacts independence. ... This is fabulous news for the PWS community, which has until now spent 10 years working towards a treatment to reduce hyperphagia. Full topline results are here: https://www.businesswire.com//Levo-Therapeutics-Announces-

16.01.2022 Meet Olivia and help fund medical research into Prader-Willi Syndrome with a tax deductible donation this end of financial year. Olivia is a beautiful girl with Prader-Willi Syndrome (PWS). Olivia loves her family and spending time with her grandparents, aunties, uncles and cousins. Liv can’t wait to turn 10 next year to get a cat, and she is already planning her next birthday around it. She loves going to the park, animals, swimming, arts and crafts and taking her dog for ...a walk. She is fascinated by the ‘olden days’ and loves steam trains. She also loves school. Due to Prader Willi Syndrome, Olivia suffers from low muscle tone and major issues with her coordination and motor planning. At only nine years of age, she also struggles with anxiety, rigid behaviour and skin picking. Olivia blames her brain when she can’t get something right and asks why her brain does that. The Prader Willi Research Foundation of Australia was established to uncover treatments to help people with PWS achieve their potential. In just a few years we have managed to support world leading research, and we continue to push to ensure that discoveries are made and treatments become available for the benefit of all people with PWS. If you are able to give this end of financial year, please do so via the link below: http://praderwilli.org.au/donate

16.01.2022 Thank you. We are completely blown away by what has been achieved. Almost $100,000 has been raised! It has far surpassed our expectations and our commitment to you now is to work hard to drive change for people with PWS. We will leave the fundraising pages open for the next 2 weeks for any late donations!

13.01.2022 A special shout-out to Team Wombat who have just ticked over the $5000 mark in the Move 15 km for May campaign. Nowell and his supporters have done a tremendous job and we are very grateful. Go team WOMBAT!!! https://www.mycause.com.au/page/248682/team-wombat

13.01.2022 A reminder that the PWS Research Grant Round to run in 2021 is now calling for Expression of Interest. PWRFA will provide up to $25,000 AUD (GST-free) to fund an Australian research project which aims to improve outcomes for people with PWS. This call closes on Friday 9th July, 2021. Head to http://praderwilli.org.au/grants for more information and please share with your networks as appropriate.

12.01.2022 The Orange Lions Club has a long history of (since 1958!) of supporting the community and this year the Prader-Willi Research Foundation Australia has been fortunate enough to receive a generous end of financial year donation. We are so grateful for this. Thank you to Debbie Butwell for facilitating this, it will make a real difference to people living with Prader-Willi Syndrome.

10.01.2022 Thank you to Monash University and 365 Wellness for sharing this article on Dr Das’s (recipient of the Prader-Willi Research Foundation Australia grant round)project Disease modelling of neurodevelopment defects in Prader-Willi Syndrome using patient specific iPSCs derived human brain organoids https://365wellness.org/using-3d-brain-organoids-to-study-/

10.01.2022 You can change lives. Meet 9 year old Olivia. Due to Prader-Willi Syndrome (PWS), Olivia suffers from low muscle tone and major issues with her coordination and motor planning. At only nine years of age, she also struggles with anxiety, rigid behaviour and skin picking. Olivia is happy, inquisitive and determined. Olivia’s determination inspires us all at the Prader Willi Research Foundation of Australia to find treatments that will change her life, and the lives of all peo...ple with PWS. The Prader Willi Research Foundation of Australia is driving an ambitious, yet achievable pipeline of ground-breaking work. Including: - An epigenetics program with Professor Marnie Blewitt activating the Magel 2 gene cluster. - A Chromosome 15 biobank with Associate Professor David Godler to enable the matching of genotype and phenotype to help develop effective treatments. - The development of the Prader-Willi Health Care Centre of Excellence pilot. - A 2020 Grant round calling for applications in basic & applied science with intent to improve the lives of people with PWS. With your help PWRFA can achieve this planned work and more. If you are able, please donate via the below link this end of financial year. Your tax-deductible donation WILL make a very real difference to Olivia's life and others like her who live with PWS. http://praderwilli.org.au/donate

10.01.2022 **Invitation to participate in an exercise trial - NSW and QLD** "We want to find out more about the benefits of exercising at a community gym for people with Prader-Willi Syndrome and WE WOULD LIKE YOU TO HELP US!"... Please see the attached flyer or the trials section of our website http://praderwilli.org.au/clinical-trials for more information. Interested? If you are interested in taking part or you have any questions regarding this study, please contact Prof Nora Shields (03 94795852 or [email protected]) or Alesha Southby (03 94796310 or [email protected])

09.01.2022 **RECRUITING NOW** Hear from Alesha and Cara who are working on the PRESTO exercise trial through La Trobe University in Melbourne - led by Orof Nora Shields. It is fantastic to have such talented clinicians and an esteemed university focusing on #pws. For details on how to sign up, please see the below link. http://praderwilli.org.au/clinical-trials

09.01.2022 We would like to extend a huge thank you to Pinterest Australia. Pinterest, a fantastic platform that many of us know and love has recently opened an office in Australia. They hosted a trivia night for media agencies in August, and awarded a $5000 major prize to be donated to a charity of the winner's choice. We are thrilled to share that the Prader-Willi Research Foundation was selected as the recipient of this major prize. Thank you Pinterest, these funds will make a real difference. *Images used from Pinterest.

08.01.2022 Thank you Leah Habib from MediaCom Global for nominating the Prader-Willi Research Foundation as the recipient of your $5000 trivia prize from Pinterest. Congratulations on your trivia win and thank you so much facilitating this donation. We are beyond grateful!

07.01.2022 May is Prader-Willi Awareness month! Today as part of Prader-Willi Awareness Month we had the pleasure of meeting up with Tobias Kelly and giving him a ride to ...school in the Fire Truck this morning, as well as a quick tour of the Fire Station. Tobias is 10yrs old and lives with Prader-Willi Syndrome (PWS), and is also one of this years PWS Superheroes spreading awareness and raising funds for the Prada-Willi Research Foundation Australia. As more people become aware of and understand PWS it allows those with PWS to function more freely in the world as their needs and people’s expectations are met. For those that haven’t heard of Prader-Willi Syndrome - it is a complex, condition affecting almost all systems of the brain and body. Typical symptoms include an insatiable appetite, low muscle tone, developmental delays, intellectual impairment and behavioral problems. Each individual experiences symptoms of PWS in different ways and to varying degrees. Currently, there is no cure for PWS but through donations the Prader-Willi Research Foundation Australia is able to fund research to improve clinical care, symptom management, quality of life and a long term aim of finding an ideal treatment to target the genes involved in PWS. Prader-Willi Research Foundation Australia Fire and Rescue NSW #pwsawarenessmonth2021 #PWSawareness #pws #praderwillisyndrome

05.01.2022 A really big thank you to "The World's Greatest Football Club" the Adelaide University Football Club for holding a Suit and Soup day with proceeds from the raffle donated to the Prader-Willi Research Foundation (a huge $2100!). What a fantastic club. Thank you to Matt Stuart and Craig Bankes for making this possible. This is greatly appreciated and will make a real difference.

04.01.2022 Congratulations Georgina Loughnan OAM on the very deserved recognition of your contribution to those living with Prader-Willi syndrome in Australia.

03.01.2022 We would like to wish everyone a well-deserved, very happy holiday season. After a challenging 2020, we hope some laughs and good times are imminent. We thank our amazing community for all of the support we have received this year and look forward to working hard for you in 2021. With Christmas approaching, we have made an e-card available for anyone who may wish to arrange donations in lieu of gifts at the below link. The card can be printed or emailed to the recipient. Ple...ase let us know if you have any questions and feedback is very welcome. Step 1: Create a message and customise font or add company logo (*company logo box will not show on the card if it is not used) Step 2: Recipient (add donation amount, sender details and delivery method Step 3: Confirmation - preview, confirm and then pay https://www.mycause.com.au//PraderWilliResearchFoundationo

03.01.2022 We've teased you long enough - Here's the big announcement!

01.01.2022 We are pleased to announce Prader Willi Research Foundation Australia will be awarding a 2020 Research Grant for $25,000. This is an open and competitive call for Australian research projects that focus on any aspect of PWS. Researchers are invited to submit a 300 word EOI by Friday 7th August 2020. Due to COVID and current face-to-face restrictions, in 2020, PWRFA will consider applications with a basic and/or applied science focus. Clinical projects will be considered i...n the 2021 application round. For more information, guidelines and application details visit http://praderwilli.org.au/grants