Huntington's News

Genetic Testing - Life Insurance Moratorium

Posted: 9th July 2019

The Moratorium on Genetic Tests in Life Insurance came into effect from 1 July 2019 and will end on 30 June 2024. This means that from 1 July 2019, there will be a temporary suspension on the use of genetic test results as part of an insurance application up to the value of $500,000 (for death and total permanent disability), $200,000 for trauma and $4,000 a month for income protection.

(Note - in the UK the limit is 500,000 pounds sterling, a lot more than our AUD$500,000.)

 

ROCHE HD DRUG TRIAL ANNOUNCED FOR SYDNEY

Posted: 1st July 2019

The Huntington Disease Service at Westmead Hospital has been approved to participate in a new drug trial, called Generation HD1. This study tests a Huntingtin-lowering (also known as gene silencing) agent developed by IONIS, and the trial will be run by a company called Roche. The study involves lumbar punctures, MRI scans, assessments and questionnaires.


The main goal of Generation HD1 is to compare the effects, good and/or bad, of RO7234292 against placebo, in study participants with HD. Participants must be between the ages of 25-65, have early stage Huntington Disease, and meet additional criteria. It is expected the study will involve 660 people with HD worldwide.


If you would like more information, you can call Westmead on 0456 740 612. The phone will be monitored on Mondays and Thursdays. Please leave a message if we cannot answer when you call.


Huntington’s NSW & ACT, and the Huntington Disease Service at Westmead will continue to provide updates on HD research through the Huntington’s NSW&ACT website.

Newsletter Autumn 2019

Posted: 19th June 2019

Here's our latest newsletter - a re-designed version we hope you enjoy reading.

Please don't forget to complete the 2019 community survey - it will only take you 5 minutes!

Newsletter Autumn 2019

HD Service at Westmead approved to participate in 2 new drug trials

Posted: 13th May 2019

The Huntington Disease Service at Westmead Hospital has been approved to participate in two new drug trials, called PRECISION-HD1 and PRECISION-HD2. Each study tests a separate Huntingtin-lowering (also known as gene silencing) agent. They are run by a company called Wave Life Sciences based in Massachusetts, USA. The studies involve lumbar punctures, MRI scans, assessments and questionnaires.

These are Phase 1b/2a trials, meaning that they are testing an experimental treatment in humans for the first time. The main goal is to assess whether the treatments are safe and well tolerated in the treatment of Huntington’s disease when compared with a placebo control. Participants must be between the ages of 25-65, have early stage Huntington’s disease, and meet additional criteria.

The study has already commenced overseas. Information can be found at https://clinicaltrials.gov/ct2/show/NCT03225833?recrs=a&cond=huntington%27s+disease&draw=2&rank=16 and https://clinicaltrials.gov/ct2/show/NCT03225846?recrs=a&cond=huntington%27s+disease&draw=2&rank=15. It is expected that together the two studies will involve approximately 96 people worldwide.

If you would like more information, you can call the Huntington Disease Service at Westmead on 0456 740 612. The phone will be monitored on Mondays and Thursdays. Please leave a message if we do not answer when you call.

Huntington’s NSW & ACT and the Huntington Disease Service at Westmead will continue to provide updates on HD research through the Huntington’s NSW & ACT website and Facebook page

Walk 4 Hope 2019 - Earlybird Registrations Open Now

Posted: 29th April 2019

Orange           Saturday 31 August
Canberra        Sunday 8 September
Speers Point  Saturday 14 September
Parramatta     Sunday 22 September

Election commitments sought from federal politicians

Posted: 16th April 2019

Huntington’s associations have been working in partnership with other neurological organisations in developing this document seeking election commitments for our members.

Please feel free to use it if you run across anyone running for election on 18 May.

Download NAA Election commitments.pdf (2.17 MB)

Establishment of an Ageing and Disability Commissioner

Posted: 5th March 2019

The NSW Government will establish an Ageing and Disability Commissioner from 1 July 2019, to better protect adults with disability and older people from abuse, neglect and exploitation in home and community settings.

Find out more or download the factsheet.

Vignettes needed for new edition of HD facts

Posted: 5th February 2019

Dr Oliver Quarrell is compiling the 3rd edition of HD facts. This book is designed to give information to families and carers and is published by Oxford University Press. 

Are you able to write up to 500 words on one of these topics to be included as a perspective or experience of a patient, carer, or someone at risk? There will not be a payment for the entry but your contribution can be acknowledged if you wish.

  • Behavioural and emotional aspects of HD
  • Juvenile HD
  • Predictive testing
  • Testing in pregnancy
  • Participating in clinical trials

Please send your  up to 500 words to HD.thefacts@nhs.net

Dr Quarrell cannot guarantee that every entry will be used but the idea is to publish a perspective from families as part of the book. If a lot of entries are received then Dr Quarrell will write to you and ask if they can be published separately on a website.

Thank you for your contribution.

NEW EXECUTIVE OFFICER ANNOUNCED

Posted: 21st December 2018

The Board of Huntington’s NSW ACT is very pleased to announce the appointment of Lewis Kaplan as Executive Officer to lead our team from 4 February 2019.

Lewis is replacing our long-term Executive Officer, Robyn Kapp, who is retiring.

Lewis brings a wealth of experience across the public and primary health sector. Over 35 years, his previous roles have included national CEO of Diabetes Australia, Executive Director of Australian Red Cross NSW, CEO of Alzheimer’s Australia NSW and Executive Director of Council on the Ageing NSW.

The Board warmly welcomes Lewis and looks forward to working with him as we serve the Huntington’s community across NSW and ACT.

Brian Rumbold, Chairman 

 

ROCHE ANNOUNCES DETAILS OF ITS 'PIVOTAL' HUNTINGTIN-LOWERING STUDY

Posted: 19th September 2018

It’s a time of huge developments in the field of huntingtin-lowering drugs, which aim to reduce production of the huntingtin protein that causes Huntington’s disease. At the European Huntington’s Disease Network (EHDN) meeting this past week, Roche announced firm details of the first ever pivotal study of a huntingtin lowering drug – RG6042, which you might know better as Ionis-HTTRx. So what do we know about the trial? Read more here https://en.hdbuzz.net/263

Pages

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.