| SD Research & Brain donations |  | ||
| Archive | |||
|
Posted by: dot sowerby ® 01/28/2003, 11:19:14 Author Profile Mail author |
NSDA has some money set aside for spasmodic dysphonia research. The National Institute of Health in Bethesda MD has this information but we are not sure if medical professionals will see this. Please ask your doctors if they are interested or have any suggestions of how to stimulate professionals to do research on SD and let them know they can apply for a grant. DMRF has a Scientific Advisory Board of medical people that review grant applications and the deadline to submit, each year, is December 30. The grant application can be obtained by contacting: dystonia@dystonia-foundation.org Several Otolaryngologist have mentioned that so few people with SD have designated their brains to be donated, at their death, for research so they have little resources to study. NSDA said their Brain Bank is run by the University of Maryland. The phone number is 800-847-1539. Or you can register online, which I did, and/or down load form at: http://medschool.umaryland.edu/BTBank/Family/main.html click on - how to register Please help spread the word about wanting more SD research to help find a cure and how you can register for brain donation. If you have questions on any NSDA activities, I will be glad to try to answer: Dot Sowerby, AD/tremor, President of the NSDA Board of Directors
|
| | Recommend | Alert | Previous | Next | Current page |
| Replies to this message |
| Re: SD Research & Brain donations | | ||
| Re: SD Research & Brain donations -- dot sowerby | Top of Thread | Archive | |
|
Posted by: Renee Urban ® 01/28/2003, 12:46:15 Author Profile Mail author |
I think that this is a very important post, especially the information about brain donors. I would sign up to donate my brain, but I, also, have a mental illness and I think it would just be confusing to anyone looking at my brain to differentiate between the mental illness problem and the SD problem. Someone correct me if I'm wrong. I think that the quest for a cure will come from brain donors. This is the way that they made tremendous strides in the treatment of mental illness was by studying the brain. I would highly encourage EVERYONE to sign up to be a brain donor. Especially since doctors are saying that they are lacking brains to study. Renee Urban ADSD/ Austin, TEXAS |
| | Recommend | Alert | Where am I? Original Message Top of Thread | Previous | Next | Current page |
| Re: SD Research & Brain donations | | ||
| Re: Re: SD Research & Brain donations -- Renee Urban | Top of Thread | Archive | |
|
Posted by: Lynne Martinez ® 01/28/2003, 13:48:07 Author Profile Mail author |
Renee, Good point. I'm glad you brought this up in response to Dot's important post. I have a similar situation with three cases of Parkinson's, a few Essential Tremor cases and three cases of Paranoid Schizophrenia within two generations of me (close relatives) so I've wondered myself what my grey matter would look like to a researcher, with all those interesting genetic influences going on. I would think, when we donate our brains, we'd be asked to indicate what other conditions we currently have or might have a genetic proclivity toward (ie: they would have to take a family history, like any doctor does when accepting a new patient). Ideally, that may help researchers separate out what the brains have in common (the SD). At the Victoria BC Dystonia Symposium in 1999, there was a doctor's presentation on Brain Donation and a full brochure explaining the process of donation. I didn't see anything like that at the recent Miami Symposium, so it's good Dot has surfaced the subject. I'm going to give a copy of her post to my otolaryngologist. He seems to have alot of connections and is very interested in SD. --Lynne (AD/SD; Northern California) |
| | Recommend | Alert | Where am I? Original Message Top of Thread | Previous | | Current page |