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Prader-Willi Research Aus

@pwrfa

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We attract the brightest minds to #PWS research. We aim to take findings developed in the lab & translate that research into meaningful outcomes.

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ICYMI: Thank you once again to @theprojecttv for sharing our story.

#pwrfa
#praderwilli
#praderwillisyndrome
#starvingforacure
#pwsresearch by @pwrfa

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4 years ago

ANNOUNCING AUSTRALIA’S FIRST PWS NURSE COORDINATOR - A GAME CHANGER!

In our family survey, you told us that the most important thing to you is the right medical treatment for you child. We are working to deliver that for you!

We at PWRFA are incredibly excited to announce funding for Australia’s first PWS dedicated Nurse Coordinator as the cornerstone for the PWS Centre of Expertise pilot. Working with the wonderful clinical team at Queensland Childrens hospital they will provide PWS centric care coordination for newborns and children diagnosed with PWS.

Our heartfelt thanks to Dr Honey Heussler and the team at QCH for making this happen. We are delighted to be working with you.

Our heartfelt thanks also to Dr Jessica Duis who leads the PWS Centre of Excellence at Children’s Hospital Colorado, for collaborating with us.

This will change the lives and medical care for children including newborns with PWS and their families. We at PWRFA have been working around the clock to take the funds you have raised and to make life-changing care available for our children. We wouldn’t have been able to do this without your amazing ongoing support and advocacy. Thank you! This is what working together can do for our community!

Our families will see this nurse develop PWS expertise, collaborating with parents and doctors, including GPs and emergency doctors. Behind the scenes our working team will develop the National PWS Standards of Care, work on consolidation and capturing data.

It’s just the first step in a bigger plan to get all Australians with PWS access to better clinical expertise and care coordination support around and we are so happy to be able to give our community some amazing results!

We are working to announce more locations with more nurses soon.
#PWS #PWSawareness #pwsawareness #childrensmedicalcare #ChildrensMedicalCare #praderwillisyndrome #praderwillisyndromeawareness by @pwrfa

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3 years ago

Huge news, Bringing Hope to Life just got bigger. Our matching partner Bright Minds Biosciences is doubling the first $20,000 in gifts, and now a generous family in our community has stepped forward to match the next $55,000, dollar for dollar. That $75,000 in matched funds, so every donation will be matched to our target of $150,000

Every dollar you give from today counts twice. Help us hit our research goal: https://pwrfa-giving-day-2026.raiselysite.com/ by @pwrfa

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16 hours ago

Did you know? PWS is estimated to affect 1 in 15,000 babies. New research suggests it could be many more. Research is the key for unlocking a better future for these babies and their families.

Every gift today is matched dollar for dollar by Bright Minds Biosciences, up to $20,000.
https://pwrfa-giving-day-2026.raiselysite.com/ by @pwrfa

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a day ago

At our 2026 PWS Research and Family Conference, Professor Marnie Blewitt explained why she believes there is real reason for hope in gene activation research for Prader-Willi syndrome. In PWS, the genes are present but switched off, and researchers are exploring ways to switch them back on.

This research is still at an early stage, but the science is moving forward, and your support helps keep it moving.

Join us tonight at 7:30pm AEST for "Bringing Hope to Life: The NOVA Trial, Gene Activation, and Giving Day 2026", including a watch party of Professor Blewitt's full session with live Q&A.
Register: https://praderwilli.supporterhub.net.au/events/september-webinar

#BringingHopeToLife #PraderWilliSyndrome #PWRFA #GivingDay2026 by @pwrfa

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5 days ago

Tonight! Bringing Hope to Life webinar, 7:30pm AEST.

Join us live as we launch Giving Day 2026, hear a NOVA trial update from Bright Minds Biosciences, and watch Prof Marnie Blewitt's conference session together. Marnie will then join us in person for live Q&A.

Register: https://praderwilli.supporterhub.net.au/events/september-webinar by @pwrfa

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5 days ago

We're thrilled to share that PWRFA has received a $20,000 CommBank Staff Foundation Community Grant! 💛

A heartfelt thank you to Brynie Hall, sister-in-law to one of our PWS families, for nominating us.

The grant will fund 'Our Stories, Our System', a project that puts the voices of our community at its centre. Together, we'll listen to the Australian PWS community, gather real stories of health system experiences, and identify the three journeys with the greatest power to drive change.

Your stories and experiences are what will make this project meaningful, and we can't wait to share more as it gets underway.

This grant is a reminder of what one person can make possible. If your workplace offers community grants, or you'd like to help in other ways, we'd love to hear from you at info@praderwilli.org.au

Thank you to the Commbank Staff Foundation members whose generosity makes Community Grants possible. by @pwrfa

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6 days ago

WEBINAR this Wednesday, 30th September 7:30pm AEST.

Join us to launch Giving Day 2026, hear a NOVA trial update from Bright Minds Biosciences, and watch Prof Marnie Blewitt's conference session together, live, with Q&A after each session.

Register via the link to join or if you are unable to make it register to receive the recording:
https://praderwilli.supporterhub.net.au/events/september-webinar by @pwrfa

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7 days ago

We did it! What a massive and rich three days. Thank you to everyone who brought your energy and time - whether you spoke, volunteered or attended. At some times it was heavy going, at other times incredibly uplifting.

The resounding message? We have more hope than ever before and with hope comes an obligation to act. PWRFA's commitment to you is to keep acting and we invite all families and friends of PWS to take action with us.

Recordings will start to be made available soon. by @pwrfa

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10 days ago

Real research momentum, funded by this community.
This year's Ignition grant round funded a new PWS animal model, brought to Australia for the first time. Another 2025 PWRFA research grant has resulted in a provisional patent application for Dr Andrew Tai's work on antisense oligonucleotides (ASOs) at the Perron Institute in WA.

Both are early-stage steps, and both are real progress, happening because of gifts like yours.

Every gift today is matched dollar for dollar by Bright Minds Bioscience, up to $20,000.
https://pwrfa-giving-day-2026.raiselysite.com/ by @pwrfa

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10 days ago

This Giving Day, your gift builds something lasting.
The Clinical Care Guidelines connects health professionals working with Prader-Willi syndrome across Australia, sharing their experience and expertise with one another to build a shared clinical resource toward the best standard of PWS care.

The first $50,000 raised this Giving Day goes directly to this network. Every gift is matched dollar for dollar by Bright Minds Bioscience, up to $20,000, live now. https://pwrfa-giving-day-2026.raiselysite.com/ by @pwrfa

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11 days ago

This Giving Day, we want to hear from you. What does hope look like in your family's life with Prader-Willi syndrome? Share a photo, a memory or a few words about what keeps you hopeful, in the comments or by message, and we may feature it here later in the campaign.

Every story helps bring hope to life for the next family. Visit the website to donate today: https://pwrfa-giving-day-2026.raiselysite.com/ by @pwrfa

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12 days ago