tag:blogger.com,1999:blog-10081281.post3554076464226187756..comments2024-03-10T11:27:23.742-07:00Comments on At Risk for Huntington's Disease: The Brain Activity Map Project: short- and long-term prospects for Huntington’s disease researchGene Veritashttp://www.blogger.com/profile/10911736205741688185noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-10081281.post-15384519471888986362014-09-12T09:23:08.961-07:002014-09-12T09:23:08.961-07:00Larry, Keep up the work .. We support youLarry, Keep up the work .. We support youTaranoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-40644997948526565432013-03-22T08:59:22.595-07:002013-03-22T08:59:22.595-07:00I am relatively new to the HD community and I must...I am relatively new to the HD community and I must admit I have been confused by all the players in the field, many who you mention in this blog, and what their true motivations really are. My story with HD started when the Sipione research group in Alberta, Canada published data on GM1 ganglioside in mouse models of HD. GM1 was pioneered by an Italian Pharma company many years ago. The molecule was purified from Cow brain. Whe Mad Cow disease came along, the company could not find a verified source of raw material to produce GM1 so the clinical trials that were ongoing for Parkinson's and Spinal cord injury, sort of limp to their conclusion and the company went out of business. GM1 was shown to have disease modifying effects on Parkinson's disease and positive treatment effects on certain spinal cord injuries, but the research died because there was no longer any source of pharmaceutical quantities of GM1 in the world. We have worked for almost 20 years developing a safe, and verified source to replace unknown cattle brains in the producion process. We have a flock of sheep that are carriers for a genetic disease, that results in massive accumulation of GM1 ganglioside in their brain and other tissues. We have sold our GM1 through a company called Avanti Polar Lipids for research use for many years. In order to meet the demand for Huntington's patients, all we have to do is raise more sheep. There is no other source that will satify the FDA for a natural product. We tried to offer this material to the folks in Canada, and we where politely dismissed. Evidently they have signed on with a company that is trying to make a semisynthetic GM1 that to my knowledge and everyone else who should know, has never been done in any quantity. CHDI is somehow also involved and when at the encouragement of HDSA, I contacted them, I was also politely rejected in a form letter.<br />Further inquiries in CHDI resulted in 2nd hand accusations that we were only "in it for the money". Later I find out that they are doing GM1 studies, apparently with the group in Canada, but still won't take the time to contact us. The word from HDSA is that CHDI will contact us if their other approach doesn't work out. Really? We believe that hese sheep were created by God for this purpose and even though we continue to hit roadblocks, we won't give up. We have 30,000 HD patients to treat, and then we have to start working on Parkinson's. Larry Holler DVM, PhD Glycoscienceresearch.comLarry Holler DVM, PhDnoreply@blogger.com