Join Us for the National Symposium on Spasmodic Dysphonia
The NSDA is dedicated to providing support and education for people living with spasmodic dysphonia and we hope you will join us for our National Symposium on Saturday, May 18, 2013, in Arlington, VA. The meeting will bring together expert faculty present and discuss the latest information on spasmodic dysphonia. Register today! More...
The meeting will be held at Hilton Crystal City at Washington Reagan National Airport which is located at 2399 Jefferson Davis Highway, Arlington, VA. The closest airport is National Airport (DCA) and there is a free shuttle from the airport to the hotel. The nearest Metro stop is Crystal City.
In addition to the Symposium on Saturday, there will be some optional programs including: Welcome Reception at 7:30 p.m.
Saturday: Dinner (additional cost)
Sunday: Half Day Tour of Washington DC (additional cost)
We hope you will join us for this exciting event and meet many Dysphonia Champions!
8:00 a.m. Registration Opens
8:15 a.m. Ambassador Program Check-in
8:45 a.m. Welcome: Charlie Reavis, NSDA President
9:00 a.m. Overview of Spasmodic Dysphonia: Steven Bielamowicz, M.D., George Washington University, Washington, DC
9:20 a.m. Use of Botulinum Toxin for the Treatment of Spasmodic Dysphonia: Christopher Chang, M.D., Fauquier Ear, Nose, & Throat Consultants, Warrenton, VA
9:40 a.m. SLAD-R Surgical Procedure for Spasmodic Dysphonia: Young J. Kim, M.D., Ph.D, Johns Hopkins Hospital, Baltimore, MD
10:00 a.m. Break
10:20 a.m. Looking at the Big Picture: Possible Causes of Dystonia: Mark Hallett, M.D., National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health, Bethesda, MD
10:40 a.m. Research Update on Spasmodic Dysphonia: Christy Ludlow, Ph.D., James Madison University, Harrisonburg, VA
11:00 a.m. Question and Answer Panel
12:00 p.m. Lunch
1:00 p.m. Spanning the Spectrum of SD: Teresa Goddard, Job Accomadations Network and Judge Maryellen Halvorsen, Social Security Adminstration
2:00 p.m. Speaking Easier with Voice Exercises: Jan Potter Reed, MS, CCC-SLP, University of Illinois Medical Center, Chicago, IL
2:20 p.m. Navigating Emotional Aspects of Spasmodic Dysphonia: Tom Hofmann, Ph.D., Hodges University, Naples, FL
2:40 p.m. Break
3:00 p.m. Living with SD Break-Out Sessions (choose one)
Living with Spasmodic Dysphonia
Family and Friends
Abductor Spasmodic Dysphonia
3:50 p.m. Key Note Speaker: Diane Rehm
4:25 p.m. Closing Remarks
4:30 p.m. Adjourn
New Grant Co-Funded by the NSDA
The NSDA is pleased to announce that it is jointly funding a grant on genetics and spasmodic dysphonia with the Dystonia Medical Research Foundation. The grant, "Identification of a Spasmodic Dysphonia Gene using Exome Sequencing," is being led by Tatiana Fuchs, Ph.D., with Laurie Ozelius, Ph.D., serving as a significant contributor. Both researchers are located at Mount Sinai Medical Center in New York. More...
This grant is focused on finding a possible genetic cause of spasmodic dysphonia. Dr. Fuchs is using an innovative, powerful technique to screen all genes in a family affected by SD to identify a common gene mutation. To determine whether mutations in this gene contribute to additional SD and other focal/segmental primary dystonia cases, Dr. Fuchs will also screen for this gene in an additional group of volunteers with focal dystonia. This research may reveal a new causative gene for SD and possibly other forms of primary dystonia, contributing to our understanding of the disease mechanism and providing a basis for development of new therapies.
Increase in NIH Funding of SD Grants
Currently, there are 13 grants for SD research funded through the National Institutes of Health. This is a huge increase over the last five years when there have been only a handful of grants specifically on SD. This new research is focused on a wide spectrum of areas including neuro-imaging, epidemiology and pathophysiology. Scientific Director Dr. Christy Ludlow lauded the efforts of the NSDA and its advocates in raising the profile of SD in the research community. Dr Ludlow strongly encouraged all to keep up the work of advocacy and support for SD as it is making a difference. More...
Current Research Grants on Spasmodic Dysphonia funded through the National Institutes of Health
National Institute of Deafness and Communications Disorders Grants
Measuring Communicative Participation in Adults with Communication Disorders
Carolyn Baylor, Ph.D., University of Washington
Neuromuscular Control of the Larynx
Dinesh Khatri Chhetri, M.D., University of California Los Angeles
Neural Modeling and Imaging of Speech
Frank Guenther, Ph.D., Boston University
Neuroimaging of Speech Motor Control
John Francis Houde, Ph.D., University of California San Francisco
Pathophysiology of Spasmodic Dysphonia: a TMS Study
Teresa Jacobson Kimberley, PT, Ph.D., University of Minnesota Twin Cities
Phonetic Influences on Auditory Feedback Control
Caroline Niziolek, Ph.D., University of California San Francisco
Role of Neurotransmission and Functional CNS Networks in Spasmodic Dysphonia
Kristina Simonyan, M.D., Ph.D., Mount Sinai School of Medicine
Imaging Genetics of Spasmodic Dysphonia
Kristina Simonyan, M.D., Ph.D. Mount Sinai School of Medicine
Kinaesthetic Loss as a Marker for Spasmodic Dysphonia
Peter Watson, Ph.D. University of Minnesota Twin Cities
Funded through the National Institute of Neurological Disorders and Stroke
Pathophysiology of Basal Ganglia Disorders
Mark Hallett, M.D., National Institute of Neurological Disorders and Stroke
Hyder A. Jinnah, M.D., Ph.D., Emory University
Diagnostic Error in Dystonia
Caroline M. Tanner, M.D., Ph.D., Parkinson's Institute
Epidemiology of Dystonia in a Multi-Ethnic Population
Caroline M. Tanner, M.D., Ph.D. Parkinson's Institute
As of June 1, 2012
Snowdon Climb a Huge Success
By Anne McDougall: On 24th June 2012, thirty one eager but mostly inexperienced individuals, set out to climb Mt Snowdon in North Wales, UK in aid of the National Spasmodic Dysphonia Association. The group comprised family, friends and colleagues, and consisted of all age groups, including a little girl aged seven and a dog called Ruby. The climb of Snowdon (the highest mountain in England and Wales, elevation 3560 feet or 1085 m) was organised by Anne McDougall, an SD patient, with her husband John taking up the challenge on her behalf. More...
We all met in the car park at the bottom of the mountain and after a few group photographs the ascent commenced in cloudy damp conditions. The weather in the UK had been atrocious for weeks but no one expected the conditions on the mountain to be quite so challenging. Very soon on the way up the conditions began to deteriorate; the cloud came down, the rain started and the mist rolled in.
These intrepid supporters all pushed bravely on as I passed, waving at them from the relative comfort of the rickety, cramped, damp old train. On my arrival at the top there was thick fog, driving rain and it was blowing a gale. I imagined that many of the group would have turned back but with true grit everyone eventually arrived at the cafe at the top. All in good spirits, cold and wet, but laughing about their experience and their individual struggles to reach the top. John made sure everyone had arrived safely, gallantly going back to find and help a few stragglers.
Once everyone was refreshed with a hot drink, many were eager to start their descent, as the return can be more challenging that the upward climb. I began my journey down by train feeling inspired by all of them, and also feeling somewhat guilty that they had all put themselves through this for me.
At the bottom the weather had improved dramatically; the sun was out and it was warm. Later during the afternoon individual small groups began to arrive at the bottom and gather in the square for a drink, tired but elated by their success and willing to swap their experiences with fellow trekkers. One topic of conversation was “What shall we do next?”
I am inspired by them all and I thank every single one of them for their time, energy and contribution in making this a very successful fund raising event. Our aim was to have raised a few thousand dollars for NSDA – to help finance their mission of awareness, research and support for people with SD.
Photos of the climb are posted in the Photo Gallery section: http://www.dysphonia.org/photogallery.php