Jeff CarrollBy Dr Jeff Carroll Edited by Professor Ed Wild

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 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

Prof Sarah Tabrizi at the World Congress on Huntington's disease
Prof Sarah Tabrizi at the World Congress on Huntington’s disease

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

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

Everyone can play a part in helping to bring a cure closer - Peter Harper

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 - 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, will help

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

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