Hi Folks- Here's the link to information about the Isis ASO trial on ClinicalTrials.gov: . Robiby robi - Huntington's Disease Support Center
Hi Barb, and others! Thanks for asking me to comment. I agree with your feeling that the announcement of the Isis antisense trial is exciting news. At this point the conduct of the trial is in the hands of Isis and they are responsible for disseminating information. As I am sure you are aware, once a trial is about to start what the sponsor (in this case Isis) may say to potential participantsby robi - Huntington's Disease Support Center
Thank you for your kind words, Will and Shar. One more thing - for the record, CHDI does a lot of things but it is NOT the angel behind the Georgetown University HD Care Initiative. That honor goes to Jack Griffin and the Griffin Foundation. Thank you Jack and family! Robiby robi - Huntington's Disease Support Center
Much much more than a minor annoyance but it will not impact our mission to find effective treatments for HD ASAP. Robiby robi - Huntington's Disease Support Center
Hi Will- Thank you very much for participating in this trial! What you are doing is important. I am sure your fine example will inspire others to participate in this, and other trials and studies. Cheers, Robiby robi - Huntington's Disease Support Center
Here is some great worked by LaVonne Goodman and others: Obsessive-Compulsive Behaviour An International Survey-based Algorithm for the Pharmacologic Treatment of Obsessive-Compulsive Behaviors in Huntington’s Disease - #. Chorea An International Survey-based Algorithm for the Pharmacologic Treatment of Chorea in Huntington’s Disease - #. Irritability An International Surveyby robi - Huntington's Disease Support Center
Hi PhilBro- You might also have a look at an active device for drop foot made by a company named Bioness. Originally developed for stoke, it is now being used by people with drop foot as a result of multiple sclerosis and other indications. I am aware of this for non-HD reasons. You can read more about it here: www.bioness.com/Bioness_for_Foot_Drop.php. Robiby robi - Huntington's Disease Support Center
Try again to make link live - Robiby robi - Huntington's Disease Support Center
Hi all- New website from Michael Hayden and others at the University of British Columbia. Special thanks goes to PhD candidate Alice Hawkins. www.predictivetestingforhd.com Robiby robi - Huntington's Disease Support Center
Hi all- If you are interested in the cognitive changes that take place in HD, you may also be interested in one of the ways researchers are trying to get at those issues: "What do sheep brains have to do with HD?" Regards, Robiby robi - Huntington's Disease Support Center
Hi HDAC- Marsha's data about paternal CAG transmission is correct, but I thought people might find some more context useful. These data appear in a paper by Vanessa Wheeler (Wheeler et al. 2007, J.Med. Genet. 44, 695-701). Dr Wheeler told me "these data came from 184 paternal transmissions. For the 311 maternal transmissions in the same study we found 34.5% expansions, 34.5% contractioby robi - Huntington's Disease Support Center
Barb- For the record, "HD Ready" was not a CHDI initiative. I don't know what leads you to you think it was. Notwithstanding that I don't think the intention of the program was to treat anyone as "stupid". I would be interested in hearing about why you, or anyone else on this board, thinks that was the case. Certainly not something we would ever want to do, even inadvertby robi - Huntington's Disease Support Center
Thanks Will, for leading me to clarify: I don't mean to suggest that pHDs should not take ANY supplements - only that EACH specific "supplement" (or each specific combination of supplements) should be considered for dose, effect, side effects, interactions with other treatments, etc. based on all the available evidence. Unfortunately it's not subject that lends itself to generalitiesby robi - Huntington's Disease Support Center
Hi all- First of all, I am very glad this discussion is taking place. The more open discussion the better. And even better than that is when people bring experiments and evidence to the debate. Second, I don't what "supplements" means, used by itself. Jeff made a good point that there appears to some evidence that a couple of specific things - "supplements" previously tby robi - Huntington's Disease Support Center
Hi HDAC- For more on Dr Yang's experiment and a non-technical explanation of the science, see the May 16 entry in Nacho's blog - . Robiby robi - Huntington's Disease Support Center
EHDN investigators to provide an independent review of the ACR-16 results:by robi - Huntington's Disease Support Center
Hi all- This is good news: "Dear all: It gives me immense pleasure to announce that we have reached the magic number of 220 subjects enrolled in HART. CONGRATULATIONS!!! I want to thank everyone associated with this project for your hard work and perseverance. A few more subjects are expected to be enrolled over the next couple of days, but we will (finally) clby robi - Huntington's Disease Support Center
Hi all- Forgive me for starting a new thread to respond to a comment by SteveI in the early thread "Early Detection of Huntington's Disease". Both to respond to Steve and to make a part of Dr Paulsen's paper more accessible (and to get a snappy new subject line) I'm copying below a portion of the paper near the end: "When Does HD Begin? If one were to ask the question, 'whby robi - Huntington's Disease Support Center
Hi Barb- Signing up for an account (somewhere on the page there) is free. That's what I did. Robiby robi - Huntington's Disease Support Center
Hi all- Here is a very interesting new review paper by Jane Paulsen, the principal investigator of the PREDICT-HD study: Robiby robi - Huntington's Disease Support Center
Hi Debra- That's great! A big thanks to your husband and you. Robiby robi - Huntington's Disease Support Center
Hi all- The recent news about the trial of Dimebon in Alzheimer's disease as reported by Barb, Marsha and others was disappointing. However, Huntington's disease is NOT Alzheimer's disease. The Phase 2 DIMOND study showed that Dimebon may have a beneficial effect on cognition in HD patients. NOW, MORE THAN EVER, IT IS IMPORTANT FOR THE HD COMMUNITY TO COMPLETE THE HORIZON TRIAL SO THby robi - Huntington's Disease Support Center
Hi Everybody- Copenhagen, 3 February 2010 ? NeuroSearch (NEUR) today reported positive top-line results from the MermaiHD study, the European Phase III study with Huntexil? (pridopidine) in Huntington's disease. The MermaiHD study met the primary endpoint to show an effect on voluntary motor function. In addition, data from the 437 Huntington patients, who participated in the study (= ITTby robi - Huntington's Disease Support Center
I am taking the liberty of pasting in an important message from Jean Miller (Thank you, Jean!): "For those that didn't know, HDSA launched an on-line survey on their website for families seen by an HDSA Center of Excellence to provide feedback on their experience. Louise Vetter is a very strong believer in feedback being an invaluable tool that can only help strengthen HDSA. Overallby robi - Huntington's Disease Support Center
Hi Barb- The writer is "Shedding Light on HD", another anonymous blogger like "Gene Veritas". Robiby robi - Huntington's Disease Support Center
Thanks Eric - very thoughtful. Robiby robi - Huntington's Disease Support Center
Hi Bob- I would like to follow-up with you about this in the interest of making trials generally, and this trial in particular, go faster. Would you contact me on Monday after you speak to the UTSW study site and let me know what happened? I can be reached at robi.blumenstein@chdifoby robi - Huntington's Disease Support Center
Hi Nora- You should get in touch with BJ Viau in Apple Valley, MN. He gave a great talk at the recent World Congress on Huntington's Disease in Vancouver about how he and his family have mastered the art of staging hoopathons. It was very inspirational. I don't want to publicly post his email without his permission but if you send me an email at robi.bluby robi - Huntington's Disease Support Center
Hi medmo- If you don't mind my asking, what state? I'd be interested in getting in touch with you directly to hear more about your approach to figuring out what people really want (great idea!) particularly if it is HD specific. Robiby robi - Huntington's Disease Support Center