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Oz Buzz Updates: Day 1

Our first daily report from the Huntington’s disease World Congress brings together all our live updates from our twitter feed. Follow us live for the second day at @HDBuzzFeed. Video of the day’s live Oz Buzz session – with news, interviews and features – will be available to watch at HDBuzz.net later this week.

Monday, September 12, 2011

8:26 – G'day from Melbourne! The World Congress on Huntington’s disease has begun. Stay tuned for Jeff and Ed’s science news updates

8:33 – Ed and Jeff are reporting from the opening session

8:36 – Ed: Prof Julie Stout opens the meeting and welcomes the most international audience ever at a World Congress

8:55 – Ed: Peter Harper recaps the history of HD & highlights the sharing of successes and challenges between scientists & family members

9:60 – Jeff: Peter Harper encourages us to remember that the HD community has been pioneers of how patient communities can serve each other

9:16 – Jeff: “Everyone can play a part in helping to bring a cure closer” – Peter Harper.

9:27 – Jeff: Real treatments are in development. Hopefully new trials within 24 months. – Sarah Tabrizi

9:37 – Ed: Sirtuin-1 inhibitor drug that may help cells get rid of mutant protein being tested in patients now

9:39 – Jeff: Pharma giant Pfizer hopes to test a novel compound in HD patients within 24 months. – Sarah Tabrizi

9:47 – Ed: Tabrizi announces the Track-HD battery of tests to enable us to run clinical trials in early HD to test new drugs

9:50 – Jeff: Despite brain atrophy, HD mutation carriers don’t do worse over 24 months on mental or motor tasks – TRACK HD results

10:40 – Ed: Tabrizi announces TrackOn-HD, a new international study of how the brains of HD gene carriers compensate for the genetic mutation

10:15 – Don’t forget we’ll put your questions to top HD researchers live at the end of the day. Tweet them or email [email protected]

10:41 – Ed and Jeff now reporting from “clinical research” session

10:48 – Ed: Re-analysing data about ‘normal’ and ‘expanded’ CAG length casts doubt on any relationship between the two – Prof Jim Gusella

10:50 – Ed: Expanded alleles are still bad- but a person’s ‘lower’ CAG score doesn’t seem to matter

11:10 – Jeff: Whole genomes of HD patients are now being sequenced to look for changes associated with early or late symptom onset

11:30 – Jeff: Jim Gusella – slime mold have a Huntingtin gene, and we can learn what the gene normally does by studying it

11:15 – Jeff: PREDICT-HD has 10 years of brain imaging from 657 subjects, allowing investigators to understand how HD changes brains

11:16 – Ed: MRI scans can pick up widespread brain changes as far as 15 years before symptom onset- Elizabeth Aylward/PREDICT-HD study

11:30 – Jeff: HD patients with different symptoms – psychiatric, movement or thinking – have different shaped brains – Elizabeth Aylward

11:42 – Jeff: Tony Hannan tells us that making the lives if mice more exciting improves HD symptoms

11:49 – Ed: HD mice that are more active have chemical and gene control changes that improve the connections between neurons

11:59 – Ed: could drugs mimic or enhance the beneficial effects of staying active in HD? Tony Hannan is working on it

12:17 – Ed: Colin Masters studies harmful proteins in Alzheimer’s & thinks lessons learned in AD could help us to crack Huntington’s

12:20 – Ed: Huntingtin protein binds to copper atoms. Drugs that affect this might alter how harmful the protein is. Trial being planned

12:24 – Ed: Prana Biotech 12-site study of PBT2 drug aiming to reduce HD damage by influencing copper levels, starting late 2011 in Aus & USA

13:37 – Ed now reporting from session on ‘Clinical care: youth and young’. Jeff’s in the ‘Basic science: therapeutic strategies’ session

13:51 – Jeff: Isis pharma has three separate strategies to reduce levels of the mutant Huntington protein, all looking good!

13:58 – Ed: We’re only just discovering how the brain develops during teenage years. This needs to be studied in HD- Dr Nicholas Allen

14:00 – Jeff: Short-term treatment of HD mice with drugs that reduce mutant Huntington levels has long term benefit – Don Cleveland

14:12 – Ed: Visit hdyo.org – the HD youth organisation, launching Jan ‘12. International support network for young people affected by HD

14:16 – Ed: HDYO will provide info for kids, teens, young adults & parents – translated into several languages

14:37 – Ed: Moving testimonies from HD family members. People’s ability to remain strong against extraordinary adversity never fails to amaze

14:45 – Ed: Euro-HD network survey of young ppl reveals lack of support and info about many aspects of life with HD, HDYO.org will help

15:00 – Jeff: Xiao-Jiang Li is moving beyond mice, making pig and monkey models of HD

Latest Research Articles

Focusing in on fibrils; scientists give us a glimpse of huntingtin protein clumps

Published date: 8 September, 2022

A group of scientists from the EPFL in Lausanne, Switzerland have published a paper in the Journal of the American Chemical Society, describing clumps made up of a fragment of the huntingtin protein. A word that’s commonly used to describe these is “aggregates.” Using very powerful microscopes, the team was able to zoom in and ... Read more

Hereditary Disease Foundation (HDF) conference 2022 – Day 4

Published date: 2 September, 2022

DNA repair and CAG repeat instability The effect of HTT lowering on CAG repeat expansions Welcome to last day of the @hdfcures conference! We’ll only be sharing a few talks from today’s sessions, which focus on DNA repair. The first is from HDBuzz’s very own Jeff Carroll! Jeff will be sharing his work on HTT ... Read more

Hereditary Disease Foundation (HDF) conference 2022 – Day 3

Published date: 1 September, 2022

Pre-clinical work moving toward trials New tools to lower HTT showing promise in animal models Welcome back! The first talk we will be tweeting about today is from Anastasia Khvorova, who will be telling us about her teams work on lowering of Huntingtin using technology called RNAi. One of the problems in studying drug delivery ... Read more

Hereditary Disease Foundation (HDF) conference 2022 – Day 2

Published date: 31 August, 2022

We’re back for day 2 at @hdfcures! This morning’s talks will be focused on clinical trial planning and therapeutic updates from clinical studies. The sheer number of talks related to human trials compared to previous years is so encouraging! Updating metrics for clinical trials A better system for disease categorization The first talk of this ... Read more

Hereditary Disease Foundation (HDF) conference 2022 – Day 1

Published date: 31 August, 2022

Hello and welcome from the HDBuzz team who are currently at the Hereditary Disease Foundation (@hdfcures) 2022 Milton Wexler Biennial Symposium in Boston! It’s the dawn of an exciting new era for HDBuzz. Due to our new partnership with @hdfcures, we are now able to live tweet many of the talks from this meeting which ... Read more

Serious side effects reported for some people treated with the huntingtin-lowering drug AMT-130, currently in clinical trials

Published date: 29 August, 2022

Last month, we relayed positive news from uniQure’s trial testing AMT-130, a gene therapy delivered via brain surgery to lower huntingtin (HTT). Data released by uniQure in June suggested AMT-130 was safe and well tolerated in the small group of people that were treated with a low dose of the drug. Now we’re back to ... Read more