Supporting Research and Advocacy - A Proud History
Our parent group has a long history of working with and supporting our researchers stretching back several years prior to incorporation. PANS Australia and New Zealand Advocacy and Support Inc is the end result of five years of advocacy, support and fundraising via parent groups on the Facebook social media platform. In 2015 James Fletcher set up the first national Facebook support group for parents with PANDAS and PANS. By 2017 this growing parent Facebook support group had branched out into advocacy and fundraising as well as support. During 2017 the Facebook parent support group fundraised amongst itself to put on the first national conference for parents of children with PANS and PANDAS. In all six thousand dollars was raised leading up to the conference in November 2017, a conference room was paid for at Sydney Olympic Park and our expert speakers gave their time for free: Professor Russell Dale, Dr Susan Swedo and Dr Jamie Candelaria Greene were our speakers: Parents and doctors were invited to the conference, the concept was simple- pay what you can afford. In this way we were able to achieve the result of access to the conference for all our parent group, whilst also raising funds for our researchers. Over 150 doctors and parents attended the event. We raised money well above our expectations and as a result we were able to hand over a total of four thousand two hundred and twenty-two dollars to Professor Dale to use for his research into PANS. This was the beginning of our advocacy and support efforts. Between 2018 and 2020 our Facebook parent group has supported various campaigns via social media which raised several thousand more dollars for Professor Dales’ research.
Photos from our 2017 PANS PANDAS Parent Conference
Our parent group has a long history of working with and supporting our researchers stretching back several years prior to incorporation. PANS Australia and New Zealand Advocacy and Support Inc is the end result of five years of advocacy, support and fundraising via parent groups on the Facebook social media platform. In 2015 James Fletcher set up the first national Facebook support group for parents with PANDAS and PANS. By 2017 this growing parent Facebook support group had branched out into advocacy and fundraising as well as support. During 2017 the Facebook parent support group fundraised amongst itself to put on the first national conference for parents of children with PANS and PANDAS. In all six thousand dollars was raised leading up to the conference in November 2017, a conference room was paid for at Sydney Olympic Park and our expert speakers gave their time for free: Professor Russell Dale, Dr Susan Swedo and Dr Jamie Candelaria Greene were our speakers: Parents and doctors were invited to the conference, the concept was simple- pay what you can afford. In this way we were able to achieve the result of access to the conference for all our parent group, whilst also raising funds for our researchers. Over 150 doctors and parents attended the event. We raised money well above our expectations and as a result we were able to hand over a total of four thousand two hundred and twenty-two dollars to Professor Dale to use for his research into PANS. This was the beginning of our advocacy and support efforts. Between 2018 and 2020 our Facebook parent group has supported various campaigns via social media which raised several thousand more dollars for Professor Dales’ research.
Photos from our 2017 PANS PANDAS Parent Conference
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During 2018 we began to take a more active role in working with state governments, hospitals, clinicians and parents in order to improve services and treatment options for children with PANS. We began working as a collective under the banner – PANDAS PANS Australia and New Zealand Advocacy and Support. And in late 2018 our Facebook support group launched the first survey of PANS parents in Australia and New Zealand. The results of the survey are published on this website. Those results have helped inform our advocacy efforts to date.
In late 2018 into early 2019 our group was involved in important discussions with the Queensland Children’s Hospital after we learned that the ‘PANS Clinic’ at the Queensland Children’s Hospital was due to close. Those discussions and our resulting campaign ensured that the ‘PANS Clinic’ at Queensland Children’s Hospital remained in operation, as it does to this day. Buoyed by this success we set about finding further ways to support parents to access appropriate treatment pathways for their children.
By 2019 our Facebook parent support group was branching out into state sub committees and we were able to take part in advocacy campaigns across the region including:
That organization is PANS Australia and New Zealand Advocacy and Support Inc.
In late 2018 into early 2019 our group was involved in important discussions with the Queensland Children’s Hospital after we learned that the ‘PANS Clinic’ at the Queensland Children’s Hospital was due to close. Those discussions and our resulting campaign ensured that the ‘PANS Clinic’ at Queensland Children’s Hospital remained in operation, as it does to this day. Buoyed by this success we set about finding further ways to support parents to access appropriate treatment pathways for their children.
By 2019 our Facebook parent support group was branching out into state sub committees and we were able to take part in advocacy campaigns across the region including:
- Written Communications with QLD Minister for Education regarding support for children with PANS in QLD Schools
- Written Communications with Victorian Minister for Education regarding support for children with PANS in Victorian Schools
- Written submission to the Chairperson of the Royal Commission on Victoria’s Mental Health System regarding PANS
- Written communications with the Victorian ‘Health Pathways’ suite regarding treatment pathways for PANS patients in Victoria.
- Written communications with the Victorian Ministers for Health and Mental Health regarding treatment pathways for PANS patients in Victoria
- Written communications with Melbourne Royal Children’s Hospital regarding treatment pathways for PANS patients in Victoria
- Formation of a Victorian Working group which Liaises (ongoing) with clinicians and government departments regarding treatment pathways for PANS patients in Victoria
- Written Communications with Victorian Minister for Education and Shadow Minister for Education regarding ‘Supporting children with PANS in the Victorian school setting.’
That organization is PANS Australia and New Zealand Advocacy and Support Inc.
