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
