Pallister-Hall Syndrome /PHS/ Support Hub

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Pallister-Hall Syndrome /PHS/ Support Hub

Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Pallister-Hall Syndrome /PHS/ Support Hub, Post Office Box 88, Toowoomba.

Pallister-Hall Syndrome [PHS] is an extremely rare genetic disorder that may be apparent at birth; it is a multiple congenital anomaly syndrome, not a disease and it affects all races of people. Proudly Sponsored by MedicReady (R), the Pallister-Hall Syndrome Support Hub has been established to encourage, raise and advance the public awareness of Pallister-Hall Syndrome [PHS] throughout the world by: informing and educating the public, PHS seizure patients, their families, carers, attending specialists, medical practitioners, allied health professionals and other interested persons about this extremely rare multiple anomaly congenital syndrome, its causes, diagnostic features, clinical characteristics and treatment options. Quite contrary to much earlier medical literature, Pallister-Hall Syndrome [PHS] is no longer considered an early lethality disorder; in fact, patients - given the correct medical intervention as required - will more than likely live a long and fruitful life and would more than likely die from something other than the disorder itself! Disclaimer:

The content of this page has been compiled as a public service for the benefit of patients, their families, carers, treating specialists, medical practitioners, and other interested persons in the hope that Pallister-Hall Syndrome (PHS), its peculiarities, effects and diagnostic features can be more widely recognized, known about and better understood; the primary objective being to alleviate the fears, the stress, the frustration and the hopelessness that is often experienced by those desperately searching for information in their pursuit of knowledge and a diagnosis. That information contained herein has been researched, compiled and is based on independent information, materials and resources supplied by third parties; it is provided for awareness, educational, reference and research purposes only and is provided in good faith. In the compilation of the content for this page, the author/compiler has relied on the accuracy of that information, materials and resources available and deemed current at the time of writing. As technological, scientific, medical, diagnostic and treatment techniques and methods are changing and advancing at a rapid pace, that information contained in this page can be updated, or considered out-of-date at any time. Whilst every effort has been made to ensure and supply reliable, accurate and up-to-date information, facts and references to other materials and resources about Pallister-Hall Syndrome (PHS), it should be noted and understood that what is contained here should in no way be seen, taken, or used as a substitute for individual and/or specific advice relevant to the diagnosis, management of clinical symptoms, or treatments associated with Pallister-Hall Syndrome (PHS). As there can be discrepancies between some of that information, materials and resources contained and referred to in this page, and that elsewhere online, the author/compiler gives no guarantee as to the accuracy and conclusiveness of the said content, and accepts no responsibility whatsoever for any resultant errors contained here, or for any impairment, disability, death or loss, howsoever caused, that may be suffered by any individual, corporation, institution, or other body from any reliance on that information, materials and resources contained herein. Copyright:

ALL RIGHTS RESERVED © George William Helon: Australia; 2001-2021

That information that is contained here may be used for reference and research purposes only. Attending specialists, medical practitioners and/or allied health professionals, if you are going to quote my work, at least have the professional decency to acknowledge your source.

26/10/2023

Well, here I am again! The face of Epilepsy Action Australia for the next week drawing attention to Gelastic (Laughing) Seizures.

https://tinyurl.com/George-Helon-Epilepsy-Action

05/06/2022

FOR AUSTRALIANS ONLY!

Did you know, there are some seriously misinformed and confused people who vehemently believe between a carer and the person being cared for there is a wad of cash called a carer’s pension received by a carer in addition to any government primary pension or benefit, e.g. the DSP, or Aged Pension. THIS IS A MYTH!
Australia's carers need to be properly recognised and cared for.
If you haven'nt already, please SIGN and SHARE this PETITION: https://www.change.org/CarersAustraliaPetition
Contrary to what some might surmise, carers do not receive a secondary $987.60 pension each fortnight to look after an aged, infirm, disabled, or incapacitated person 24/7/365.
There is no third income shared between two people; albeit some may qualify for the $136.50 fortnightly carer's allowance.
So let’s set the record straight!
The fact of the matter is carer’s pension no longer exists; it was renamed carer’s payment in July 1997 and is, by definition, a fortnightly income support payment for people who are unable to support themselves through substantial paid employment due to the demands of their caring role.
Carer’s allowance came into being on 1 July 1999; it replaced and combined child disability allowance (CDA) and the domiciliary nursing care benefit (DNCB) and was paid at the rate of $75.60 per fortnight.
In the twenty-three years to 2022 the average increase to carer’s allowance has been $2.65, or 2.61% per year irrespective of increases to workloads, inflation, the cost of living, support services, and to the carer’s payment.
By definition carer’s allowance is a fortnightly payment that recognises the care provided to a person with disability or medical condition in a private home.
Carer’s allowance is paid at the rate of $136.50 a fortnight, $68.25 a week, $9.75 a day, or just 41 cents an hour.
Over the decades no government has faced the reality of the sacrifices and price we pay as carers head on, but they’re happy to have us quietly working away in the background for next to nothing, saving them billions of dollars in unpaid care whilst we suffer physically, mentally and financially.
Those receiving Carer's Allowance receive only 8.83% of the National Minimum Wage for working 24 hours a day, 7 days a week, and 365 days of the year.
Carers not only forfeit potential lifetime earnings, but miss out on thousands of dollars in superannuation retirement savings.
Carers get no holiday leave entitlements or benefits.
Carers often dip into, and deplete their own financial reserves in supporting the person(s) they care for.
When their caring role is at an end, carers under retirement age, or ineligible for a primary income support benefit from Centrelink will often find themselves literally punished and thrown on the JobSeeker scrap-heap; a harsh reality for many older Australians!
It is estimated those caring for family members actually save the government – the Australian taxpayer, the community, you – more than $77.9 billion a year providing informal/primary care across Australia.
The carer’s allowance of $3549 per year is reprehensible to say the least as it is not even enough to cover the basic costs of keeping a vehicle on the road.
Please sign and share this petition to friends, family and your local media, as you never know when you might find yourself as a carer or in desperate need of one.
Carers don't just play an integral part in Australia's aged care and health systems, they underpin them!

31/05/2022

For those in Australia!

HELP STOP the EXPLOITATION OF CARERS …. NOW!

Carers don't just play an integral part in Australia's aged care and health systems, they underpin them!

Some CARERS GET AS LITTLE AS 41 CENTS AN HOUR to look after an aged, infirm, disabled, or incapacitated person 24/7/365!

If you haven’t already, PLEASE SIGN and SHARE this national PETITION:

https://www.change.org/CarersAustraliaPetition

15/05/2022

Each year unpaid informal/primary carers across Australia save the government more than $77.9 billion dollars!

CARERS GET AS LITTLE AS 41 CENTS AN HOUR to look after an aged, infirm, disabled, or incapacitated person 24/7/365!

If you haven’t already, PLEASE SIGN and SHARE this national PETITION which calls on the Federal government “to recognise and care for carers, especially those only in receipt of a Carer's Allowance who need immediate, realistic and proper financial recognition.”

https://www.change.org/CarersAustraliaPetition

11/05/2022

CARERS CONTINUE TO BE EXPLOITED!

“Over the decades no government has faced the reality of the sacrifices and price we pay as carers head on, but they’re happy to have us quietly working for next to nothing in the background, saving them billions of dollars in unpaid care whilst we suffer physically, mentally and financially. This issue should be front and centre of the political campaigning!”

If you haven't already, PLEASE SIGN and SHARE this PETITION:

https://www.change.org/CarersAustraliaPetition

20/03/2022

PLEASE SIGN AND SHARE MY PETITION:

The Federal Government touts that older Australians should be encouraged to live longer at home before moving into nursing homes; but many carers only receive a Carer’s Allowance of $136.50 a fortnight - this equates to $3549.00 a year, $273.00 a month, $68.25 a week, $9.75 a day, or just 41 cents an hour to look after an aged, infirm or disabled person 24/7/365.

According to information at the website of the Australian government's Fair Work Ombudsman, as at 1 July 2021 "the National Minimum Wage (for a 38 hour week) is $20.33 per hour or $772.60 per week."

Those receiving Carer's Allowance receive only 8.83% of the National Minimum Wage for working 24 hours a day, 7 days a week, and 365 days of the year.

"All employees working in Australia are entitled to a minimum wage. This is the minimum amount an employee can be paid for the work that they're doing;" but alas carers are not considered employees but Australian government benefit recipients.

This is reprehensible, inexcusable and an affront to carers, their families and those being cared for!

It’s time the Federal Government rightly recognised Australia's 2.65 million unpaid carers and the need for immediate, realistic and proper financial recognition.

Time to Recognise and Care for Unpaid Carers!

28/03/2021

UPDATE! Please note that my patient information article "The Anatomy of a Gelastic (or Laughing) Seizure" has been updated to 28 March 2021:

11/01/2021

PLEASE NOTE!

The article 'The Anatomy of a Gelastic (or Laughing) Seizure' - previously a Note - has moved permanently to my website at this URL:
https://www.georgehelon.com/files/George_Helon_Gelastic_Seizures.pdf

Latest PDF version (12 January 2021) of my research article for those with, looking after, supporting, or treating those with Gelastic (or Laughing) Seizures.

Please check back regularly for updates.

02/08/2020

SOME NEWS!

As most of the Members of this Hub are based in the United States of America I thought you might be interested to know that a few months ago I was Commissioned a Kentucky Colonel by The Honourable Andy Beshear, Governor of the Commonwealth of Kentucky: United States of America (15 April 2020).

Thank you all for your support and assistance you give to each other!

You can read more here: https://georgehelon.com/honours-awards/

02/12/2019

Truly an honour to be a recipient in the 2019 Queensland Community Achievement Awards.

Receiving Certificate of Achievement from the Queensland State Minister for Communities and Minister for Disability Services and Seniors, the Hon. Coralee O'Rourke MP: Brisbane; Friday 29 November 2019.

Image Copyright (C) George W. Helon: Australia; 2019.

28/11/2019

I (George Helon) am now a member of the Genetic Support Network of Victoria's (GSNV) Speakers Bureau and am available for public speaking engagements.

You can read more about my experience in the genetics community and the topics l can present on here:

Our speaker bank is comprised of public speakers with personal experience with genetics as an affected individual, carer, or support group lead. Our speakers are versed in a range of topics from navigating the health system to familial impact, and are eager to share with the community the story of t...

Address

Post Office Box 88
Toowoomba, QLD
4350

Website

https://gardn.org.au/support-groups/directory/#!biz/id/590171499865a16229a3ad91

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Our Story

Proudly Sponsored by MedicReady (R), the Pallister-Hall Syndrome Support Hub has been established to encourage, raise and advance the public awareness of Pallister-Hall Syndrome [PHS] throughout the world by: informing and educating the public, PHS seizure patients, their families, carers, attending specialists, medical practitioners, allied health professionals and other interested persons about this extremely rare multiple anomaly congenital syndrome, its causes, diagnostic features, clinical characteristics and treatment options. Quite contrary to much earlier medical literature, Pallister-Hall Syndrome [PHS] is no longer considered an early lethality disorder; in fact, patients - given the correct medical intervention as required - will more than likely live a long and fruitful life and would more than likely die from something other than the disorder itself! Disclaimer: The content of this page has been compiled as a public service for the benefit of patients, their families, carers, treating specialists, medical practitioners, and other interested persons in the hope that Pallister-Hall Syndrome (PHS), its peculiarities, effects and diagnostic features can be more widely recognized, known about and better understood; the primary objective being to alleviate the fears, the stress, the frustration and the hopelessness that is often experienced by those desperately searching for information in their pursuit of knowledge and a diagnosis. That information contained herein has been researched, compiled and is based on independent information, materials and resources supplied by third parties; it is provided for awareness, educational, reference and research purposes only and is provided in good faith. In the compilation of the content for this page, the author/compiler has relied on the accuracy of that information, materials and resources available and deemed current at the time of writing. As technological, scientific, medical, diagnostic and treatment techniques and methods are changing and advancing at a rapid pace, that information contained in this page can be updated, or considered out-of-date at any time. Whilst every effort has been made to ensure and supply reliable, accurate and up-to-date information, facts and references to other materials and resources about Pallister-Hall Syndrome (PHS), it should be noted and understood that what is contained here should in no way be seen, taken, or used as a substitute for individual and/or specific advice relevant to the diagnosis, management of clinical symptoms, or treatments associated with Pallister-Hall Syndrome (PHS). As there can be discrepancies between some of that information, materials and resources contained and referred to in this page, and that elsewhere online, the author/compiler gives no guarantee as to the accuracy and conclusiveness of the said content, and accepts no responsibility whatsoever for any resultant errors contained here, or for any impairment, disability, death or loss, howsoever caused, that may be suffered by any individual, corporation, institution, or other body from any reliance on that information, materials and resources contained herein. Copyright: ALL RIGHTS RESERVED © George William Helon: Australia; 2001-2018 That information that is contained here may be used for reference and research purposes only. Attending specialists, medical practitioners and/or allied health professionals, if you are going to quote my work, at least have the professional decency to acknowledge your source.