This May, PWRFA would like to celebrate International Prader-Willi month with our inaugural walk, held in multiple locations across Australia – Melbourne, Sydney, Perth, Newcastle & Orange. Together we will raise funds to Find 15 and change life with PWS.
What is it? Finding 15 is a fun and social fundraising walk. Walkers will do laps of a central oval, track or park, our walkers will complete various distances: 2, 5 or 10 km. We anticipate walkers will take a maximum of 3 hours.
When is it? Finding 15 will be held on the first weekend in May, in
Melbourne: Sunday 5th May 1 - 4pm Sandringham Athletics Field, Glamis Avenue Hampton
Sydney: Saturday 4th May 1 - 4pm Silverwater Park, 2 Clyde St Silverwater
Perth: Sunday 5th May 10am - 1pm Lake Monger Reserve, Powis Street access Wembley
Newcastle.: Sunday 5th May 1 - 4pm Hunter Sports Centre, 43 Stockland Drive Glendale
Orange: Saturday 4th May 7am. Robertson Park, Byng St Orange
How do I participate? You will need to register to walk at http://Finding15Walk.gofundraise.com.au and seek sponsors for your efforts from your friends, family and work colleagues. All registered walkers (excluding individuals with PWS and their immediate families, and walkers under 18yrs of age) will be asked to contribute a $20 registration fee to cover the cost of the venue hire, event incidentals, and event shirt to wear on the day (handed out at the event).
If you don’t wish to walk, you can also support our cause by sponsoring a walker or the event at http://Finding15Walk.gofundraise.com.au
Wednesday 27th June 2018 - Dr David Segal - Prospects of gene therapy for Prader-Willi syndrome
Dr Segal visited Melbourne from the Genome Center at the MIND Institute, University of California, Davis. He is coming to Australia at the invitation of the Foundation for Angelman Syndrome Australia (FAST). FAST held a seminar in Sydney that you can find out about here. Research in the Segal lab focuses on genome engineering for gene therapy and his research has the potential to lead to treatments for PWS.
The family session webinar recording can be found here.
[Please note audio quality is resolved 14 mins into the recording]
The 4th Asia Pacific Prader-Willi Syndrome conference 18-20th October 2018
The Australian and New Zealand Prader-Willi Syndrome Associations are hosting the 4th Asia Pacific PWS conference. The conference provides opportunity for scientists, professionals, parents and caregivers to join together, providing a forum to share expertise. Details of the conference can be found here.
Rare Voices Australia National Rare Disease Summit -16-17th November 2018
The biennial Rare Disease Summit will take place on the 16th and 17th November 2018 at Bayview Eden Melbourne. All rare disease stakeholders interested are asked to express interest here.
PWS Awareness Month - May
May is Prader-Willi syndrome awareness month. Ways to get involved:
You can join us in raising awareness on the need for research by checking out the how to take action page on our website.
You can download our brochure to use to support fundraising activities here
Join the efforts of Prader-Willi parent support associations across Australia and New Zealand by "Going Orange for PWS".
Spread the word about Prader-Willi syndrome on social media and your community!