Huntington's Disease Association Auckland

Huntington's Disease Association Auckland

Huntington's Disease Association Auckland is a not for profit charity supporting individuals and families affected by Huntington's Disease

Mission: Our aim is to maximise the quality of life of people living with HD by: - Ensuring those who need it get the right support services and medical attention; - Enabling others to understand the disease; and - Furthering research to manage and cure Huntington's Disease.

Operating as usual

Please message, if you would like ticket limited spaces so hurry

Join the Huntington's Disease Association Auckland for an exciting film screening next month!

In 2017, HD Auckland Association was fortunate enough to be invited and travel with family members to the Vatican to meet with the Pope who held an audience with the Huntington's Disease community. He talked about "HD Hidden No More" (HDdennomore), which was a call from the Pope to acknowledge this destructive disease and help fight against it.

"Dancing at the Vatican" is a 40 minute documentary about this extraordinary journey. "Pounamu to the Pope" is a 10-minute film completed by HD Auckland Association about the journey made by a group of Kiwis travelling to meet the Pope highlighting HD in Aotearoa.

Mental Health Week WA

Please do not forget how important your own mental health is and never hesitate to talk about how you are feeling

https://www.facebook.com/MentalHealthWeekWA/

Official page for Mental Health Week in WA sharing announcements, news, updates, photos, tips, activities and events in Western Australia.

eurohuntington.org

COVID-19: Excersice – European Huntington Association

http://eurohuntington.org/covid-19-excersice/

eurohuntington.org It is important to try and stay as physically active as you can during this time – both for your physical and mental health. Most countries now allow people to go for a walk, run or bike and you can do so while maintaining social distancing. Social distance means only coming in close contact with ...

HD Young Adult Study defines the sweet spot: symptom-free with measurable changes - HDBuzz - Huntington’s disease research news.

https://en.hdbuzz.net/286?fbclid=IwAR39a2u76KH4F7DuIIKE7op15defblZsJxiNBnuXicpRHvz9DHcmTpx0coA

en.hdbuzz.net Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.

independent.co.uk

Bradley Walsh holds back tears over ‘heartbreaking’ story about care home residents

https://www.independent.co.uk/arts-entertainment/tv/news/bradley-walsh-this-morning-care-homes-coronavirus-b885752.html

‘I apologise, it’s so upsetting and I had no idea this was going on,’ Walsh said

An amazing afternoon with amazing people thank you to you all

Please RSVP by Tuesday

Photos from Huntington's Disease Association Auckland's post

Another Year... Thank you for everybody’s support.

Thank you Dr Phillips for a great informative, exciting presentation. For more information please contact HDA,

Today the MoH announce “that there are now no active cases of COVID-19 in New Zealand! The fight isn't over yet, but this is a milestone. Help us stay at the bottom of the graph by keeping up with good hand hygiene, cough and sneeze etiquette and keeping track of your movements with NZ COVID Tracer.”
Keep safe everyone
💕💕❤️

surveymonkey.com

COVID19 Wellbeing survey

https://www.surveymonkey.com/r/hda-covidsurvey
Dear members
Please take 5min to complete we really need this information
Thank you for participating

surveymonkey.com Take this survey powered by surveymonkey.com. Create your own surveys for free.

Woody Guthrie

DID YOU KNOW? MAY IS HUNTINGTON'S DISEASE AWARENESS MONTH...so let's talk about HD!

Here's a bit about Woody Guthrie's story with HD written by his granddaughter, Anna Canoni...

When Woody Guthrie first became symptomatic with Huntington’s, his wife Marjorie had to invent caregiving. There were no resources for anyone with this rare disease. To be honest, the doctors just didn’t know enough about Huntington’s to be helpful to families.

She spoke to Woody’s doctor, Dr. Whittier at Creedmore State Hospital in Queens, NY, where Woody spent the last year of his life. Dr. Whittier said if they just knew more families with HD, they could really make a difference. Most people were either misdiagnosed or they didn’t know they were sick with Huntington’s.

As Marjorie put it, “When Woody became ill I was told that the case was hopeless and helpless. Assuming that was so, I just said, well, I’ve got to live with hopeless and helpless. And if my children have the disease, I’m going to have to live with that too…

But after a long period, in and out of that hospital, I said to myself, “Why is it hopeless and helpless?” And with my kids now being old enough to be able to take care of themselves, I went to Dr. Whittier, who was in charge of Creedmoor Institute, where Woody was at that time, and said, “I want to help”.

And he introduced me to some other scientists and they said, “You might be able to help if you could just find families. We believe that this disorder is all over the world, it is hidden, families don’t even know they have it, and those that do are so ashamed they won’t tell anybody because there’s a stigma attached.” With that kind of help, I began to look for families with this disease and then founded the Committee to Combat Huntington’s Disease. We found the disorder was much more prevalent than anybody believed possible.”

Marjorie Guthrie founded Huntington's Disease Society of America in 1967, to ensure that there would be guidance and resources for anyone affected by Huntington's disease.

#LetsTalkAboutHD #HDSA

We'll continue to talk and share Woody & Marjorie's story througout this month.

trademe.co.nz

Recycled Pallet Coffee table

https://www.trademe.co.nz/Browse/Listing.aspx?id=2628933019

Hi Everyone! Check out this neat upcycled pallet coffee table that’s up for sale to raise money for the HDA!

Would appreciate any support and any bids!

Please bid, bid, bid & Share, share, share! 😎 Thanks

trademe.co.nz Raising funds for Huntington’s Auckland.

[03/30/20]   Be kind Be Safe Be in your bubble,

Cheenee, Jenna and I are still here to support you we just need to do it in other ways

We may telephone, text, Zoom, skype you or face time you

We may visit if safe to do so but stand 2 meters away from you

We may be wearing gloves, mask and eye protection this is to protect you



Covid-19 is a global issue and the endless updates from news outlets and people on social media can be completely overwhelming.
Visit the COVID-19 government website for information and pick one trusted news source and check it once per day.

We got this NZ
Just follow MoH Alerts we now level 4

Please follow Ministry of Health Guidelines
And stay health

Meet Google Drive – One place for all your files

https://drive.google.com/file/d/1Gj7P-c9esTk6_sPqHeBiljNhPztHDFZ2/view?usp=drivesdk

Feb 2020 Newsletter

accounts.google.com Google Drive is a free way to keep your files backed up and easy to reach from any phone, tablet, or computer. Start with 15GB of Google storage – free.

nytimes.com

Haunted by a Gene

https://www.nytimes.com/2020/03/10/health/huntingtons-disease-wexler.html

nytimes.com For the first time, Nancy Wexler reveals that she has inherited the disease she has spent her life studying.

HDYO (Huntington's Disease Youth Organisation)

https://www.facebook.com/211347868940538/posts/3499426580132634/?vh=e&d=n

Please watch the video for an important message about Congress from our European Chair, Hayley.

It is with regret that we at HDYO have to postpone our inaugural Young Adult Congress which was scheduled for 9-11 May 2020.
It will now be held 12th-14th March 2021.

This comes after discussions with the Glasgow authorities and the venue about the COVID-19 Coronavirus
It has not been an easy decision, but based on advice and guidance from local experts on the risk and level of disruption that Coronavirus poses over the coming months, we feel that it is the only option available.

We will work with anyone who has already booked their travel to help them reschedule for the new dates. Click for the FAQs on our website for further details:- www.hdyocongress.org

We remain extremely excited for Congress in 2021 and we hope that everyone will be able to attend in March 2021. Thanks to everyone for all their hard work so far.

We apologize if this decision causes any difficulties for you, but hope you understand. We’ll keep you updated on social media.
If you have questions or need help please contact [email protected]

Huntington’s disease therapeutics conference 2020 - Day 2 - HDBuzz - Huntington’s disease research news.

https://en.hdbuzz.net/281

en.hdbuzz.net Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.

Huntington’s disease therapeutics conference 2020 - Day 1 - HDBuzz - Huntington’s disease research news.

https://en.hdbuzz.net/280

en.hdbuzz.net Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.

[03/01/20]   URGENT
The Association needs your help our website is broken anybody with some free time and website skills please call

trademe.co.nz

Upcycled Pallet furniture - coffee table Fundraiser

https://www.trademe.co.nz/home-living/outdoor-garden-conservatory/outdoor-furniture/table-chair-sets/auction-2531285021.htm

Hi Everyone! Check out this neat upcycled pallet coffee table that’s up for sale to raise money for the HDA!

Would appreciate any support and any bids!

Please bid, bid, bid & Share, share, share! 😎 Thanks

5 Hours to go!

trademe.co.nz Coffee table indoor or outdoor made from a recycled pallet, leftover paint, odd screws and washers, hours of sanding and new swivel casters (100mm 2 with brakes...

Unpacking Wave's PRECISION-HD2 huntingtin-lowering trial announcement - HDBuzz - Huntington’s disease research news.

https://en.hdbuzz.net/277

en.hdbuzz.net Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.

Unpacking Wave's PRECISION-HD2 huntingtin-lowering trial announcement - HDBuzz - Huntington’s disease research news.

https://en.hdbuzz.net/277

en.hdbuzz.net Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.

Goran Persson Quote: “Let our New Year's resolution be this: we will be there for one another as fellow members of humanity, in the finest sense of the word.”

Jenna-Lea Rose, Cheenee Mandawe and the boys

Come on Please nominate our Charity and get your friends to nominate us to
Together we got thiS

Please comment on the original post saying huntingtons disease association Auckland. Every vote counts💕

Day 12 of 12 Days of Goodwill. For our last day of 12 days of Goodwill, we would like to give back to a wonderful Charity in your community. Nominate a charity of your choice that would benefit from a free cinema hire for fundraising! Terms and Conditions apply. #SpreadingTheCinemaCheer

Thank You to all
Have a great Christmas

As we count down the final day to Christmas, we’d like to take the time to tell you how much we appreciate your support this year. We wish you a very happy Christmas and New Year. Treasure and appreciate your family and loved ones, check on your neighbours and those who may be alone at Christmas. Enjoy this beautiful country we live in, Travel safe and we look forward to seeing you again in 2020. thank you for your trust and belief in us. We look forward to seeing you all in the coming year.
Meri Kirihimete me te Hape Nū Ia

Merry Christmas and a Happy New Year from the team at Huntington’s Auckland

Thank you everyone who have made a donation to us “Tis the season for giving “this month. All donations will go to families to spread a little Christmas Cheer so thank you. You are all awesome
Want make a donation It's easy,
ASB 12- 3039-0883852-00 make a one off donation or set up automatic payment amount of $5, = ensures phone contact, $50 ensures home visit, $300 ensures teaching session to health professionals
Thank you!!!
❤️❤️💕💕

🎄🎄🎄 ‘Tis the season for giving! Please show your support by ordering your Christmas cards from us! $10 for 10cards with 2 uniquely kiwi designs including a donation that will go directly back to those who need it the most at this time of year (+$3.50p&p) 🎄🎄🎄

Please share with all your friends, family and whanau.🎁

surveymonkey.com

Service Evaluation

Hi Everyone,

Our survey will be closing soon so this is your LAST CHANCE to put forth your feedback about our service. We want to know what you think about us and our work.

Thank you so much to all those who have filled it out so far but we still need a bit more help.
All responses are anonymous so feel free to give us your honest opinion.

We would greatly appreciate it if you could PLEASE take a moment to fill in this quick 5minute survey as it will really help us improve our service and plan for the next 3 years.


https://www.surveymonkey.com/r/hd-esurvey

surveymonkey.com Take this survey powered by surveymonkey.com. Create your own surveys for free.

eurohuntington.org

http://eurohuntington.org/wp-content/uploads/2019/10/Roche-Genentech-global-HD-community-letter-October-2019-1.pdf

eurohuntington.org

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7A Taylors Rd, Sandringham
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