Spasmodic Dysphonia Bulletin Board

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Posted by: hoarse whisperer ® 02/28/2008, 00:14:12

I registered for the Annual NSDA Symposium on Saturday, March 29, at the Sheraton City Centre in Salt Lake City, Utah. I hope that everyone who is able to attend will seriously consider it because the agenda and speakers are fantastic and this is a great opportunity to meet so many others with SD. Registration information: http://www.dysphonia.org/events/event.asp?id=1868 Hotel reservations with special discount: http://www.starwoodmeeting.com/book/dysphonia Symposium Program: 8:30 A.M. Welcome David Barton, NSDA President 8:40 A.M. Update on Dystonia Perla Thulin, M.D. University of Utah School of Medicine 9:00 A.M. Botulinum Toxins: Emerging Complexities and Clinical Applications Mark LeDoux, M.D. University of Tennessee 9:20 A.M. Surgery for SD: Where are we now? Marshall E. Smith, M.D. University of Utah School of Medicine 9:50 A.M. Muscle Tension Dysphonia versus SD: A Source of Diagnostic Confusion Nelson Roy, Ph.D., CCC-SLP University of Utah School of Medicine 10:20 A.M. Break 10:30 A.M. NSDA and Support 10:40 A.M. The Effects of Self-Perception on Treatment Paradigms in SD Mark S. Courey, M.D. University of California, San Francisco 11:10 A.M. Outcome measurement for SD: Asking the Experts Carolyn Baylor, Ph.C., CCC-SLP Tanya Eadie, Ph.D., CCC-SLP University of Washington 11:40 A.M. Easier Done Than Said: Living with a Broken Voice Karen Feeley 12:00 P.M. Lunch 1:00 P.M. Breakout Sessions These sessions will be held concurrently, so we ask that you only choose one. 1. ABductor Spasmodic Dysphonia 2. Family and Friends - spouses, friends, and those supporting someone with SD 3. Living with Spasmodic Dysphonia 4. Under 40 and Dealing with SD 2:15 P.M. How NSDA Supports Research 2:25 P.M. Epidemiologic Factors of SD: A Preliminary Investigation Kristine Tanner, Ph.D., CCC-SLP University of Utah School of Medicine 2:45 P.M. Recent Research Findings on SD Christy Ludlow, Ph.D. National Institutes of Neurological Disease and Stroke, NIH 3:20 P.M. Question and Answer Session 4:20 P.M. NSDA and Awareness 4:30 P.M. Keynote Speaker: Chip Hanauer Motorsports Hall of Famer with SD 5:00 P.M. Closing Remarks 5:15 P.M. Adjourn Book Premiere with Karen Feeley: Easier Done than Said…Living with a Broken Voice This new book published by the NSDA is a compendium of shared experiences from within the SD community. It is designed to provide comfort and guidance to those who are struggling to understand SD; explain to family, friends, co-workers, and other interested parties the challenges faced by people with SD; and bring SD to the general public’s attention. Genetic Study by Dr. Mark LeDoux: Dr. LeDoux is working on a project to identify genes associated with Spasmodic Dysphonia. If you would like to participate in this study at the NSDA Symposium, medical histories and two tubes of blood will be acquired from each participant. Bring a copy of your medical records and a list of current medications, including detailed information regarding treatments for SD, particularly injections of botulinum toxin.

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Re: I did it! Re: I did it! -- hoarse whisperer Top of thread Archive Posted by: Mary Bifaro ® 02/28/2008, 14:07:43 Dear Lori, I will very much look forward to meeting you in Salt Lake City next month. I feel like I already know you after reading your informative posts here for so long. I hope that many others will be encouraged to attend our 2008 annual symposium. It promises to be a remarkable get-together. Sincerely, Mary Bifaro Abductor SD since 1987 Charlotte, NC | Recommend | Alert Where am I? Original message Top of thread Current page Re: I did it! Re: I did it! -- hoarse whisperer Top of thread Archive Posted by: TMK ® 03/02/2008, 18:21:19 Great for you! My husband and I are still trying to decide if we are going. He is always wanting more information so the info you posted helped a lot. He even seemed interested in my participating in the genetic study (of course HE wouldn't have to give the blood!). Thank you for your post and I hope to see you there! TMK ABSD Dallas | Recommend | Alert Where am I? Original message Top of thread Current page Re: I did it! Re: Re: I did it! -- TMK Top of thread Archive Posted by: hoarse whisperer ® 03/02/2008, 22:01:14 Hi Trish, I plan to participate in the genetic study too. Since my brother also has SD, hopefully I have some good genetic material for them. ;-) I sure hope you can go. Even if your husband doesn't want to come, you should still go anyway. It will be a great experience, so informative, and it would be so nice for both of us to have someone there that we know personally. Keep me posted. Lori | Recommend | Alert Where am I? Original message Top of thread Current page Re: I did it! Re: Re: I did it! -- hoarse whisperer Top of thread Archive Posted by: magistramarla ® 03/07/2008, 20:25:14 Please tell me more about the genetic study??? The docs at Baylor College of Medicine have decided that I have a rare genetic degenerative disease called Spinocerebellar ataxia, and that it is the cause of my SD, Meniere's, neuropathy, imbalance, et al. They took 10 vials of blood for genetic study, so I wonder if My case would be a good one for the SD genetic study? Marla | Recommend | Alert Where am I? Original message Top of thread Current page Re: I did it! Re: Re: I did it! -- magistramarla Top of thread Archive Posted by: hoarse whisperer ® 03/09/2008, 22:42:12 You might be able to get more information from NSDA. The only information I found was from the symposium agenda. Genetic Study by Dr. Mark LeDoux: Dr. LeDoux is working on a project to identify genes associated with Spasmodic Dysphonia. If you would like to participate in this study at the NSDA Symposium, medical histories and two tubes of blood will be acquired from each participant. Bring a copy of your medical records and a list of current medications, including detailed information regarding treatments for SD, particularly injections of botulinum toxin. | Recommend | Alert Where am I? Original message Top of thread Current page Re: I did it! Re: Re: I did it! -- hoarse whisperer Top of thread Archive Posted by: Mary Bifaro ® 03/10/2008, 12:44:19 Dr. Mark LeDoux, from the University of Tennessee in Memphis, is the lead investigator in the study. I participated in the study when he conducted it during the NSDA's annual symposium in 2006. Dr. LeDoux is a neurogeneticist with a keen interest in SD. In my opinion, having SD patients participate in clinical research trials is a "win-win" for us all. Sincerely, Mary Bifaro Abductor SD since 1987 Charlotte, NC | Recommend | Alert Where am I? Original message Top of thread Current page Re: I did it! Re: Re: I did it! -- Mary Bifaro Top of thread Archive Posted by: magistramarla ® 03/10/2008, 21:21:37 Thanks for the info! I won't be at the symposium, but I will show this info to the docs at the Baylor ataxia clinic who are using me in their research, just in case they are interested in what Dr. LeDoux is doing. I've told them that I'll gladly participate in any research. My children & grandkids have a 50% chance of inheriting my ataxia, so if the research that is done on me can save them some problems later, I'm fine with it! Marla | Recommend | Alert Where am I? Original message Top of thread Current page