Huntington's News

Update from Huntington Disease Research Team at Westmead re COVID-19

Posted: 7th April 2020

We are posting this advice from the HD Research Team at Westmead.

 

2nd April 2020

 

Dear Community Members,

You might be wondering what is happening to the research and drug trials that are underway at Westmead Hospital, run by Dr Clement Loy and the Huntington Disease Research Team.

In these difficult days for everybody facing the challenges of COVID-19, the situation is changing so rapidly, it’s hard to know when to update you. But we didn’t want to leave you in the dark – we know how important research is to the HD community.

Here are the main points in brief.

  • We currently have participants in both gene-silencing/Huntington-lowering trials: Generation-HD, (run by Roche Pharmaceuticals), and Precision-HD, (run by WAVE Life Sciences). We are not recruiting any new participants for drug trials at the moment, both studies are fully recruited at our site.
  • We are continuing with both of these studies, but with some changes. We are acting in accordance with the recommendations to keep study participants, staff, their families and the general community as safe as possible.  In consultation with the study sponsors, we are focussing on the most important study visits meaning some visits may be missed. The Westmead staff are in touch with participants on a regular basis.
  • The Enroll-HD study has been suspended for at least 8 weeks. Staff at Westmead are in the process of informing all participants who have upcoming annual appointments. We are not recruiting new participants at the moment, but will likely welcome new people again once the pandemic is over.

Around the world, HD researchers are sharing their commitment to continue with the research studies, while following recommended measures to protect against COVID-19.

The team at Westmead send the entire HD community our best wishes at this difficult time. We will try to keep you up-to-date with what’s happening with HD research. Stay safe!

 

Huntington Disease Research Team at Westmead

HD News AUTUMN 2020

Posted: 6th April 2020

Dear Members and Supporters

Please follow this link to download the Autumn 2020 HD News.

Wishing you and your families all the best for Easter, and hoping you can celebrate as best you can in social isolation.

Kind regards

Lewis Kaplan
CEO

Coping with self-isolation for People with Huntington's disease

Posted: 28th March 2020

We have borrowed this excellent material from the UK Huntington’s Society. Thanks guys.

Coping with self-isolation for people with Huntington’s disease

We understand that the recent outbreak of COVID-19 can be both scary and confusing for those affected by Huntington’s disease and their families/friends.

Those affected by Huntington’s disease who are symptomatic and susceptible to respiratory infection and their carers/family members are advised to self-isolate. As a carer, this can raise a lot of questions about how to protect yourself and your loved one from the virus.

Huntington’s disease can be challenging on a good day, therefore preparing for self-isolation and being informed on the best ways to cope during this difficult and confusing time is very important. Below, are some tips on coping with COVID-19 isolation for people with Huntington’s disease.

Routine

Many people with Huntington’s thrive on routine and this will likely be disrupted during isolation. Where possible, it is best to simulate an existing routine. For example, if it is normal to visit a café at 10 am on a Thursday, maybe go into the garden or a different room and have a dedicated coffee time? Or perhaps take that time to try out a relaxation session? Huntington’s UK has an online relaxation webinar which gives excellent relaxation techniques and guides audiences through a relaxation session. Mimicking routine as much as possible can be healthy for everyone in the household and external carers/support. Sticking to a routine can help avoid apathy and prompt movement, socialisation and fun.

Being together

During self-isolation, people will be forced to spend a lot of time with others in their household. This can be a huge challenge for all involved. It is best to try and maintain periods of separation, this can be hard for those living in close quarters, but distance can be exercised simply by spending time in different rooms. For example, if the person affected by Huntington’s would usually go to a day centre for a few hours, instead make sure they are safe and occupied, perhaps put a movie on for them, creating distance for that time. This time can then be spent doing something else, whether that is cleaning or having a little time to relax and read a book.

Take a moment to read the UK Behaviour and Communication Guide explains some of the symptoms of Huntington’s and why those affected behave in certain ways. The guide explains what can be done to manage a situation before it gets out of hand. They also have a webinar entitled ‘Well-being in carers’ that could also be useful.

Hygiene

Many people affected by Huntington’s disease can find hygiene a challenge in day to day life. For some, hygiene is an on-going issue which can be a cause for concern at this time. There are several ways to cater for this. For instance, putting up posters around the home with reminders to wash hands and demonstrate how to correctly wash hands. If possible, hand sanitizer with at least 60% alcohol can be a quick alternative to hand-washing and might be easier for the person with Huntington’s. Antibacterial wipes are also an option.

Self-isolating

For people with Huntington’s self-isolation may be a particular challenge, especially if they are used to going out and being on the go constantly. If desperate to venture outside, a garden may be the solution, however, not everyone has a garden. If access to a garden is not possible or it is too small for real exercise, look into remote areas to visit separate from other members of the public.

Looking after yourself

We all need to look after our well-being and mental health at this time. The UK Huntington’s Society has a number of resources which are primarily aimed at carers but are also extremely useful for everyone.

We hope that this post has been informative. If you have any other questions or are in need of support or advice, please contact us on 9874 9777 or email info@huntingtonsnsw.org.au. Even though the office is closed, messages to this phone number and email will be checked.

At this time, fundraising is more important than ever. If you had a fundraising event planned that has been cancelled, why not think about ways you can fundraise from home? Maybe you could donate your usual daily coffee or lunch money or take part in a sponsored day without social media! If you would like to make a donation to Huntington’s NSW ACT to help aid our ongoing services during this time please contact us on 9874 9777 or email info@huntingtonsnsw.org.au.

 

The original blog page can be found here, but note the service links are for local UK services which don’t apply in Australia:  https://www.hda.org.uk/blog/coping-with-self-isolation

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We have borrowed this quote from the Huntington’s Disease Society of America. Thanks guys.

Dr. Victor Sung, Chair-Elect of (USA) HDSA’s Board of Trustees and Director of the HDSA Center of Excellence at the University of Alabama-Birmingham, provided the following guidance:

“Having HD does not make a person immunocompromised or at increased risk for contracting COVID-19 more than another person of the same age. However, persons with advanced HD and swallowing problems/aspiration risks would have an increased risk of developing pulmonary complications of COVID-19 if they contracted it. This is similar to if a person with advanced HD were to contract influenza (flu). So, there is no need for special precautions with HD, and we would just advise the social distancing and handwashing that are being recommended universally.”

Huntington's NSW ACT Response to COVID-19 Pandemic

Posted: 17th March 2020

Dear Huntington’s NSW ACT client / member / supporter / contractor

As you will be aware, the Government's advice on dealing with the COVID-19 pandemic is changing rapidly.

We have decided, in the interests of minimising the risk to our very vulnerable client group, to cancel all face to face activities except for individual client meetings from today (17 March) until further notice.  This means that support and carer groups will not meet, and art and music therapy clients will not come to our West Ryde offices.

We are continuing to meet individual NDIS and Youth Connection Program clients for now, but this may also change following health authority advice.

This move to a more restrictive model of activities aims to protect our clients and staff, and to comply with Government requirements. Looking at the situation in countries further down the pandemic’s path, we can expect that many other aspects of normal life will be restricted in the near future.

 Please bear with us as we work through the practicalities of this decision, which we don’t take lightly.

 Kind regards

 Lewis

 
 

Lewis Kaplan

Chief Executive Officer

Coronavirus pandemic preparations

Posted: 12th March 2020

We’re closely monitoring the Coronavirus (COVID-19) situation and are taking necessary steps to prepare as the pandemic is now declared.

We are establising our pandemic preparedness policy and procedures, but will largely depend on advice from health authorities.

NDIS Participants, families and carers can request alternatives to face-to-face meetings, if participants are concerned about their exposure. 

We will be advising you via this website and our Facebook page if any of our services are affected, and ask you to understand if we cancel or postpone any scheduled activities.

We encourage people with HD and those close to them to reduce their exposure to large group environments as a precaution, as we understand that those with additional vulnerabilities such as HD are at greater risk of a more severe response to the virus.

More information here (from NDIS)

We're hiring! - seeking an experienced NDIS Support Coordinator

Posted: 12th March 2020

Join a small but growing and highly committed community organisation supporting people with Huntington's disease (HD), a cruel and relentless progressive neurological condition. People with HD typically need high to very high levels of NDIS support and our Association has been providing a specialised service to NDIS clients since July 2019. You will be the second member of the team which we aim to grow further.

This is an excellent opportunity to work closely with a very experienced senior social worker as well as clinical staff from the Westmead Huntington's Outreach Service. Our team also includes a community programs officer and a youth social worker.

This is a challenging but ultimately very rewarding role for the right person.

Our offices are at West Ryde - off-street parking available. Public transport and shopping mall nearby.

Salary packaging available at the highest (PBI) level.

You can download the position description here.

Please submit your application by CoB Monday 30 March to info@huntingtonsnsw.org.au, using the subject line: NDIS Support Coordinator as follows:

  • Application letter
  • Statement addressing mandatory qualifications and requirements in the position description
  • CV

NOTE: Failure to address the mandatory qualifications and requirements will result in your application being rejected.

If you have any questions about this role, please call Giselle Beaumont on 02 9874 9777.


 

Youth Connection Program grant from Ansvar Insurance Community Education Program

Posted: 13th February 2020

We are very pleased to announce that we have received a generous grant from Ansvar Insurance Community Education Program (https://www.ansvar.com.au/community-education-program/) to run our Youth Connection Program for a further 12 months. Thanks so much Ansvar!

HD News Summer 2019

Posted: 11th December 2019

Dear Members and Supporters

We are taking the liberty of sending you a hard copy of the Summer 2019 edition of HD News, but if you'd also like to read it online, please do so HERE. (Please note this is a large file - 9 MB.)

Best wishes for Christmas and the New Year from the Board, volunteers and staff at Huntington's NSW ACT.

PLEASE NOTE: Our offices will be closed from 19 December - 6 January.

Westpac Foundation Community Grant 2019 Recipient

Posted: 26th September 2019

We’re thrilled to announce that we have been named as one of the #WestpacFoundation Community Grant recipients for 2019. 

This $10,000 grant will help us to investigate ways to provide the Art & Music therapy clubs to our wider community.

 

Check out your latest HD News

Posted: 26th September 2019

Dear Members and Supporters

Please click to access your latest HD Newsletter and an invitation to your Annual General Meeting.

We are broadcasting the AGM by videoconference this year for those who can’t attend in person.

I look forward to hearing from you if you have any issues or questions arising from articles in the newsletter or more generally about our work.

Kind regards

Lewis

Chief Executive Officer

T:  +61 2 9874 9777
M: +61 0407 108 667

E:  lewis.kaplan@huntingtonsnsw.org.au

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