Huntington's Disease Association Auckland is a not for profit charity supporting individuals and families affected by Huntington's Disease
Operating as usual
en.hdbuzz.net Disappointing news from Roche and Ionis; the phase III Tominersen huntingtin-lowering trial has been halted early
European Huntington Association
Set-back for the Roche study Generation HD1. Tominersen dosing will be stopped. An independent data monitoring committee advised Roche to stop the dosing of Tominersen and Roche have today decided to follow the advise. The trial participants will no longer get the drug. However the trial will NOT stop.
All participants are asked to continue to do all the tests, collect information and go to the study visits as originally planned. Why continue a trial if the advise is to stop dosing the drug? Erik Lundgren, Roche lead for the Huntington program, explains: Even if we have decided to stop dosing the drug, we want to continue to learn from all the information we collect in the study. The study is still valuable for Roche and the HD community. We hope the participants will agree to continue despite this setback. Their contribution will continue to provide very valuable knowlegde, Lundgren says.
You can read the full press release here ➡ https://bit.ly/2QALR0p
- This was a great disappointment, says Astri Arnesen, EHA President.
- We have to digest the disappointment together and not loose hope. What we have learned today is that Tominersen doesn't seem to be effective with the dosing, frequency and delivery used in Generation HD1.
-There are still a lot of questions that needs to find answers, and I am happy Roche demonstrates willingness to learn and explore futher.
- We also need to keep in mind that there are many other drugs in the pipeline and for the community there are many exciting and promising ongoing projects.
Huntington's Disease Association (Auckland) Inc.
PO Box 16181, Sandringham, Auckland 1351
23 March 2021
Tominersen Programme in manifest Huntington’s disease
As part of our ongoing partnership and commitment to the HD Community’s request for timely and transparent sharing of information, Roche Products need today to share critical information about the tominersen trial programme.
Unfortunately this morning, as many of you are now aware, we received communication that following a pre-planned review of the Phase III GENERATION HD-1 Study, the Independent Data Monitoring Committee (iDMC) has made a recommendation to stop dosing.
It is important to know that there were no new or emerging safety signals as a result of this review. Rather, the decision was based on a broad assessment of the benefits/risks of the treatment arms, compared to the placebo arm over time.
As a consequence of this decision Roche has also decided to pause dosing in the open-label extension study, GEN-EXTEND, until further analysis of the data can be completed and a fully informed decision can be made about next steps for this study. Please note however that the Phase 1 PK/PD (Pharmacokinetics/Pharmacodynamics) Study, known as GEN-PEAK, will continue, as will the HD Natural History Study.
The studies will remain ongoing, (without further dosing in GENERATION HD1 and GEN-EXTEND), and it is therefore intended that study participants will be followed by their physicians for safety and clinical outcomes. We remain very grateful for participants continuing in the studies because the data generated in this follow-up period will provide valuable information for tominersen and future research.
We appreciate and understand that there is a strong desire to learn from the data generated in the tominersen program, and we will provide as much information as we can to the community as soon as this information is made available.
In addition to the clinical studies, Roche will continue to partner with the HD community on other ongoing projects.
Most importantly, we would like to acknowledge the very real contribution and commitment of the families who are participating in these studies, as well as the broader Huntington’s community for their collaboration. There are many efforts ongoing – both within our own Roche Group and at other companies – and as we have talked about previously, it still remains a hopeful time for the community.
Rest assured that as we understand more about the data behind the decision the iDMC have made, Roche will share this with you, and whilst we are not in a position at the moment to speak to the details of future plans for the HD program, we will update you as soon as we possibly can.
Sincerely, as always
Rare Conditions Partner
Roche Products Pty Limited
European Huntington Association
Many Huntington Disease (HD) families have questions about vaccination for the COVID in HD patients 🤔
🧬Dr. Jeff Carroll and Dr. Rachel Harding have written an article about the doubts of being a HD patient and take the vaccine, not only explaining it from a medical point of view, but also in a more personal way and understanding the concerns of the families with HD patients 💙
Check it out ➡️ https://en.hdbuzz.net/299
givealittle.co.nz A very dear friend of mine has Huntington’s Disease and I have realised a lot of people don’t know what Huntington’s is.
Photos from Huntington's Disease Association Auckland's post
youtube.com COVID-19 media updateCOVID-19 1pm media update, 17 February 2021Prime Minister Jacinda Ardern and Director General of Health Dr Ashley Bloomfiled will provid...
The Government has announced a change in COVID Level from Level 1 to Level 3, effective from midnight tonight (Sunday 15 February) in Auckland.
We all know what it takes to stop the spread of this virus so we expect you to comply with the restrictions and stay at home in your bubble until COVID levels are reduced again.
This is a timely reminder to remain vigilant so we can continue to enjoy the freedoms we have been privileged to have over summer thus far.
Please stay safe and check in on elderly neighbours or relatives in Auckland to make sure they are ok with the sudden change.
Stay safe Pepole
A New Year a New Hope for Huntingtons 😌
"Pounamu to the Pope" is a 10min film completed by the HD Auckland Association about the journey made by a group of Kiwis travelling to meet the Pope highlig...
Congratulations to Matt and the HDYO team,
Congratulations to HDYO's Founder Matt Ellison who has been awarded an MBE in the Queen's New Year Honours List 2021!
A great way for us at HDYO to wish everyone a Happy New Year!
An MBE is one of the highest honours that people in the UK can receive. You have to be nominated for services to your area and you go to Buckingham Palace to receive it from the Queen.
Here's what Matt had to say:
"What a wonderful surprise it was to get the call from the Government saying I was being given an MBE. At first I didn't believe it (in fact it took me a long time to actually believe this is true) but I am honoured to receive such a prestigious honour for my work creating the Huntington's Disease Youth Organisation (HDYO).
I grew up with my father having HD. I had great difficulties coping in a family with HD, so I left school at 13 due to the stress of HD on my life. I was 21 when my father passed away. I had already tested positive for HD and knew I will get it at some point in my life.
I realised looking back that my childhood was hugely impacted by my father having HD and yet services for young people in HD families globally were non-existent. So I set about creating a charity, HDYO, to support and educate young people in HD families across the world.
HDYO launched in 2012 and has been a wonderful success since. HDYO's website and educational videos have had millions of visits. Around 6,000 young people and families have contacted HDYO from over 90 countries in that time.
I’m especially proud of our youth support/educational camps and events which have been held in Europe, North America, Australia and New Zealand and South America. Over 600 young people have attended those events at no expense to themselves or their family.
HDYO was and is not just my effort but has had hundreds of volunteers (most of them young people from HD families) who have all contributed to what HDYO is and I am honoured to work with these people every day.
I love the work that I do, I love HDYO for what it has become for young people and families and I love the HD community that HDYO seeks to help.
I am proud of what I have achieved with HDYO and I am also fortunate to be in this position and embrace this. I hope my father would be proud too and I’m so thankful for my family, my wife Marianna and son Joey, who keep me humble every day and my mother for putting up with me during my teen years!
This award not only is an honour for me personally but also for HDYO and the services it offers young people and families. This is a prestigious award for a charity that punches well above its weight each year.
We’re all very proud of Matt and I know you all will be. It’s so well deserved for his hard work and dedication building HDYO.
Happy New Year to you all ❤️❤️
We all know 2020 hasn’t been easy, and there can be lots of added stresses in the lead up to Christmas – ever growing 'to do' lists and financial and social pressures. That’s why as small as we are we will be with you in this time of need – ahakoa he iti, he pounamu. As we know that often, it‘s the small things in life that matter most.
Please do not hesitate to make contact with us if you are in need,
Together we have got this.
In 2017, a special audience with the Pope helped bring international attention to the tremendous suffering of people affected by HD throughout the world, and particularly in South America. Now, during this holiday season, comes an uplifting, heartwarming documentary charting the journey made by some incredibly brave HD families from South America to the Vatican for the meeting. Watch “Dancing at the Vatican” here for free: https://www.dancingatthevatican.com/. To help raise awareness of Huntington's disease, please share this link with two people who have not heard of HD.
dancingatthevatican.com Huntington’s Disease still carries stigma throughout the world. If you liked the film, please share it with family, friends and colleagues to help us end the stigma using #ShareToEndTheStigma.
Thank you for all your support a night of celebration at our movie premiere of Dancing at the Vatican and Pounamu to the Pope
Great to end 2020 on
Thank you all
Thank you for your support, great movie Premiere at Rialto Cinema of Dancing at the Vatican & Pounamu to the Pope
Amazing night to end 2020 on
We have about 10 tickets left for the 10th December please go to https://www.hdauckland.org/ if you would like to book a tickets
eurohuntington.org We have just launched a project called “Moving Forward” where we aim to mobilise people at risk or presymptomatic to become more involved in Huntington research. We would therefore like to hear your thoughts!
Thank you Emma Burnip another amazing researcher let’s celebrate with her,please click link below
After finally submitting my Huntington's Disease research thesis today, I thought I'd celebrate by (trying) to run the Queenstown half marathon tomorrow to support families affected by the disease.... This year I'm running to raise money for the Huntington's Disease Association Auckland who do incredible work to support people with HD, and they were particularly amazing this year going above and beyond through the lockdown! ❤️ Jo Dysart
So if you want to sponsor my attempt at running tomorrow for a great cause then click the link 😁 merci beaucoup x
givealittle.co.nz Your donations will help the HD Association Auckland to continue their amazing work to help families affected by HD.
Please go to https://www.hdauckland.org/ if you would like tickets 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.
Please do not forget how important your own mental health is and never hesitate to talk about how you are feeling
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 ...
en.hdbuzz.net Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.
‘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
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.
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.
We'll continue to talk and share Woody & Marjorie's story througout this month.