Hunter Syndrome: Debate Australian Federal Parliament

Hunter syndrome gives a new meaning to Mother's Day

10/05/2015 15:50
               Mother's Day is one day of the year that is celebrated around the world. It's a day where mothers are honored by their children. But what if you are a mother of a child with Hunter Syndrome?  What if your...

Idursulfase –IT clinical trials Australia

27/10/2013 20:47
My husband and I have remained in touch and have continued to work with Shire Australia, Genzyme and the Shire HCG United States to sponsor a clinical trial in Australia for MPS-II. From my discussions setting up a Idursulfase –IT clinical site for MPS-II is a very complicated process and takes...


03/08/2013 11:17
Title ADJOURNMENT Hunter Syndrome Database House Hansard Note: Where available, the PDF/Word icon below is provided to view the complete and fully formatted...

News alert

Users registration is required

23/01/2014 23:40
Hi friends and family. I unfortunately must inform you that our website the-for is now a closed website. This means users will need to register and be verified before they can gain access to information on this site. We unfortunately had to come to this decision because there are a...


Christian Dierkx finally has Good News

20/10/2015 15:53

Our 7 year old son Christian is the victim of government red tape.

25/10/2014 11:07
We appeared on the Sunrise program on Monday 20 October. Below is the link to the story. Just some background information about Christian and his fight for life.  Christian was diagnosed with an ultra-rare genetic...

12 months today we began seeking treatment for MPS-II sufferers in Australia

12/07/2014 20:17
   This week marks an important milestone, it is one year ago since we first embarked on pioneering a clinical trial for hunter syndrome patients in Australia. The trial known as Idursulfase IT is very important for sufferers of hunter syndrome with the more severe form given that the...

Final report on Idursulfase IT Trial ( final outcome to be reported on the Channel 7 program Australia)

21/06/2014 09:15
We are pleased to provide an update on the progress of the Intrathecal IT trial for MPS-II. The trial site selection has now progressed to the next stage and currently going through the “eligibility assessment” for running the trial. Shire is also consulting directly with the LSDP and has now...

Intrathecal clinical trial Hope is on the horizon

22/03/2014 07:11
In July 2013 we requested the pharmaceutical company Shire HGT in the U.S. to consider Australia for the Phase II/III MPS-II Intrathecal enzyme replacement trial. This clinical trial has been ongoing in the USA and the UK for a couple of years and Shire has recently began recruiting patient in...

Shire Makes Decision about Intrathecal Clinical Trial for Australia

09/01/2014 22:40
Our son Christian has hunter syndrome (MPS-II) which is a debilitating and life threatening metabolic genetic condition. He is only expected to live to his early teens without treatment. I am a person of faith so I refuse to allow this disease to take my child. But I also realize that ‘faith...

Health Minister overturned decision by her department and reinstated Christian's elaprase

18/07/2013 01:26
Campaign success for sick boy Rebecca Trigger, The West AustralianMay 28, 2013, 12:16 pm             Michelle Dierkx and 5-year-old Christian. Picture: Steve Ferrier/The West...

Christian's elaprase success story - Federal MP Steve Irons

18/07/2013 01:22
Latest News Current Articles | Archives | Search Swan Electorate: Hunter Syndrome Posted on:Wednesday, 19 June 2013   I am pleased to be able to inform the...