tag:blogger.com,1999:blog-10081281.post1200255293041354832..comments2024-03-10T11:27:23.742-07:00Comments on At Risk for Huntington's Disease: Engaging a ‘scared population’ of Huntington’s disease families by respecting their journeysGene Veritashttp://www.blogger.com/profile/10911736205741688185noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-10081281.post-7654246629655436042015-04-09T14:00:41.097-07:002015-04-09T14:00:41.097-07:00Great blog as usual. I personally find it quite ...Great blog as usual. I personally find it quite to deal with the fact that hd sufferers who present with the mental manifestation of the disease are excluded from any trials at all. Certainly in my experience this accounts for 50% of sufferers which reduces the 'pool' of volunteers even more. Bizarrely as well as then psychiatrists with no experience of hd often give them a cocktail of anti-psychotics, depressants, beta blockers and electric shock therapy, experimenting until they get the right combination of often powerful drugs which can make the hd symptoms worse. Sadly, have also found that the hd specialists often have little or no interest to in these patients (England)Anonymoushttps://www.blogger.com/profile/00632093300925273518noreply@blogger.comtag:blogger.com,1999:blog-10081281.post-29701326870634558622015-04-09T07:35:32.366-07:002015-04-09T07:35:32.366-07:00In a speech to an audience of researchers and HD f...In a speech to an audience of researchers and HD families, my husband said, "Imagine a world without clinical trials. That would be a world without hope. A world with clinical trials gives us a reason to be hopeful." I share our community's desire that more at-risk individuals would be tested and volunteer for clinical trials. Knowledge will not change the future, but it can allow us to make realistic plans and offer us the opportunity to be pioneers in finding a cure for HD. HD may rob us of many things we value, but it offers us the chance to be generous and brave by helping to find a cure for HD.Unknownhttps://www.blogger.com/profile/08983650652048379586noreply@blogger.comtag:blogger.com,1999:blog-10081281.post-67207980708120074772015-04-08T15:53:14.953-07:002015-04-08T15:53:14.953-07:00My 8 year old daughter is in rapid decline. I woul...My 8 year old daughter is in rapid decline. I would love for her to participate. I understand the desire to protect children from the unknown but for terminal diseases I think that they should be allowed. All we have is hope. Another topic for another time perhaps.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-7077085363022835172015-04-08T13:23:32.423-07:002015-04-08T13:23:32.423-07:00My husband has HD, and was all for joining trials,...My husband has HD, and was all for joining trials, but as the disease progressed, involving mental illness, he has become unable to take part. Such a cruel disease, I urge anyone who is capable to help those that are not.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-12981694337928109192015-04-08T09:27:20.118-07:002015-04-08T09:27:20.118-07:00"Sacred," indeed.
Keep on keeping' ..."Sacred," indeed. <br />Keep on keeping' on, my friend.Jimmy Pollardnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-15953158067540769312015-04-08T04:04:20.859-07:002015-04-08T04:04:20.859-07:00Thank you for all you do to keep us up-to-date on ...Thank you for all you do to keep us up-to-date on Huntington's disease drugs in clinical development.<br /><br />The link below is to a new article in Vancouver discussing the upcoming Isis Pharmaceuticals HTTRx clinical trials. It also highlights the assay for quantifying mutant Huntingtin manufactured by Promidis (which, as I recall, you highlighted in a previous blog entry).<br /><br />http://metronews.ca/news/vancouver/1333888/new-drug-for-huntingtons-disease-to-be-tested-in-vancouver/Anonymousnoreply@blogger.com