Huntington's Australia

13/10/2026

12/10/2026

WOW! Our amazing community made not 1 but 2 news outlets over the weekend. What a way to celebrate their efforts and raise awareness for Huntington's disease in Australia.

Toby and Nick crossed the finish line triumphantly at the Melbourne Marathon on Sunday, and ABC covered their inspirational story: https://www.abc.net.au/news/2026-10-12/cousin-helps-toby-holt-complete-melbourne-marathon/107251188

In Newcastle, Angela was a feature story about her Walk 4 Hope and Huntington's journey, with photos from the day (full article is paywalled). https://www.newcastleherald.com.au/story/9366293/angela-hiscock-leads-speers-point-walk-4-hope-for-charity/

Toby Holt was diagnosed with juvenile Huntington's disease at 16 years old. The disease is taking away his ability to walk and talk but thanks to a push from his cousin, he has just completed a marathon.

12/10/2026

Proof that you don't need to be in a capital city (or even Australia) to take part in Walk 4 Hope!

We recently received these photos from some of our community, celebrating the walk overseas.

Millie didn't want to miss out on the fun over in London, so she organised a few friends to walk along the Thames and across Hammersmith Bridge. True to form, the group finished off the journey with a pint by the river.

Ian and Bianca, two of our volunteers, were in Canada on the day of the Parramatta walk. That didn't stop them from donning their shirts, though.

Are you planning your 4km somewhere unique? We'd love to see a pic. Send your photos to [email protected].

11/10/2026

Support groups happening this week:

12 October, Monday
💜NSW - Newcastle Support Group

14 October, Wednesday
💜 NSW - Central Coast Carers' Group
💜 WA - Day Centre

16 October, Friday
💜 WA - Carers' Week Activity

If you'd like to join any of these groups, contact us on 1800 244 735 or email [email protected].

Visit our website for details and to RSVP: https://huntingtonsaustralia.au/support-groups

11/10/2026

Did you know that over 3 million Australians provide unpaid care to a family member or friend?

This National Carers Week (October 11 - 17) is the perfect time to recognise and celebrate every one of them.

This year's theme, "Care for a carer: Making carers visible", highlights the role we all play at home, at work, and in our communities in recognising and supporting these special people.

The Huntington's community has many carers who support their loved ones in many different ways, and we want to take a moment to recognise and thank them.

Wondering how to care for a carer you know? Ideas include going on a walk with them, offering flexible work and study conditions that help them balance their caring duties, and helping with chores and errands.

Visit the National Carers Week website at https://carersweek.com.au/ for resources and other helpful ways to care for a carer.

11/10/2026

The sun was shining in Newcastle today and Walk 4 Hope was in full swing!

We were joined by an enthusiastic crowd, all taking part in the 4km course in their own special way. But most importantly, everyone was there to show support for people impacted by Huntington's disease and help grow awareness.

Reece Plumbing took on the most important job of the day - fuelling us with a delicious sausage sizzle once the walk was over. We'd love to extend a huge thank you to them for their generous donation of time.

The day wouldn't be possible without our amazing volunteers, Angela, Lee, Bre, Paul, Brad, Alicia, Chris, Harrison & Riley on hand to greet the masses, give directions, and help ensure the day ran smoothly. We want to give a huge thank you for spending your Sunday helping make Walk 4 Hope a success.

We're also incredibly grateful to the individuals and organisations who donated prizes for the day's raffles, including John Wallace Wines, Total Tools Sandgate and Clarence Town Home Hardware. Thank you for your generosity. Also, we'd like to share our appreciation for the Hon Greg Piper MP - Member for Lake Macquarie who showed up and showed support.

Just as importantly, we want to thank YOU for coming along. Every person who shows up at Walk 4 Hope means even more funds raised, awareness earned, and support felt by the Huntington's community. Thanks for spending your Sunday with us.

Walk 4 Hope Adelaide is next weekend, October 18. Can't wait to see you there!

09/10/2026

Newcastle, ready to join us and Walk 4 Hope tomorrow? You can expect live music, merch, and a sausage sizzle - plus a fun community event supporting people impacted by Huntington's disease.

Here's all your FAQs answered:

Where do I park?
You'll find a large car park located on Park Road, off The Esplanade at Speers Point.

Where do we meet?
We'll be at Speers Point Park from 9:30 am onwards for registration. The official Walk 4 Hope start time is 10 am.

What if I don't have a ticket?
Don't worry - you can still get a ticket at the door. We'll also be selling W4H merchandise and raffle tickets.

What if I get hungry?
You're in luck! We've got a tasty sausage sizzle on-site from 11 am, free of charge for everyone attending the walk. There are also a couple of great coffee shops nearby, in case you need a caffeine boost.

For more details, including a map and schedule, visit: https://www.walk4hope.org.au/newcastle

08/10/2026

On October 17, Simon and Jack Lundy will begin a 4,000 km bike ride across Australia.

The father and son are taking on this monumental challenge to show support for families and individuals affected by Huntington's disease and to raise funds for the HD community.

Simon's father, Graham, was diagnosed with Huntington's in 2005 and passed away in 2020. Seeing how HD affected his father and their family inspired Simon to make the most of life.

Cycling from Perth to Sydney, they're taking on the adventure without a support vehicle and carrying all their own camping gear, food, and water. But it's not their first time facing a challenge like this. In 2022, they rode from Perth to Alice Springs, battling heat, flies, and plenty of dirt.

Simon and Jack aim to raise $5,000 during their ride and spread awareness of Huntington’s disease across Australia.

You can read more about their journey and donate here: https://huntingtonsaustralia.grassrootz.com/huntington-s-australia/jack-and-simon-s-ride-for-huntington-s

07/10/2026

In a landmark victory today, Australia passed new legislation protecting people from genetic discrimination in life insurance.

The changes, effective from today, mean people can now undergo genetic testing for conditions such as Huntington's disease without receiving unfair treatment from life insurers based on the results.

Led by Dr Jane Tiller, Associate Professor at Monash University, Huntington's Australia is proud to have advocated for these amendments to the Disability Discrimination Act, alongside others in the genetic and rare disease communities.

Read the news here: https://huntingtonsaustralia.au/genetic-testing-laws/

07/10/2026

Say hello to Pearl the labradoodle!

This special girl visited Coffee & Co this week, along with Nikki and Jess from Lions Assistance Dogs and showed us all the amazing stuff she can do.

All dogs are trained in South Australia and sent around the country to new owners once they're ready. They're specially trained for certain types of support, including hearing, and diabetic alert and assistance.

Pearl showed us how she alerts her owner when a smoke alarm goes off, a phone rings, or someone knocks on the door. Although the allure of her fritz treat was pretty tempting, she stayed on task.

Our Coffee & Co group was proud to gift them a box of dog toys and blankets (plus some cheeky choccies for the humans).

Thank you to Nikki, Jess and Pearl for coming along to meet the group. And a big thank you to Lions Assistance Dogs for the amazing work they do.