National Spasmodic Dysphonia Association

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 

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.

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

Dystonia Coalition

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

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

The Harvard Brain Tissue Resource Center is responsible for collecting, preserving, and distributing human tissue to qualified scientific investigators who are conducting important spasmodic dysphonia research. Scientific Director Dr. Christy Ludlow represents the NSDA on the research committee which reviews applications from researchers requesting brain tissue. Since the majority of the scientific research studies can be carried out on a very small amount of tissue, each donated brain provides a very large amount that can be used by many different researchers at institutions throughout the U.S. and worldwide. When you enroll as a potential brain donor, you are giving a very precious gift which will benefit many future generations.

The NSDA appreciates the response from the community. Based on questions received, below is an outline of the process involved. When the brain donor passes, the Next-of-Kin or Legal Representative contacts the Harvard Brain and Tissue Bank. Once the staff at Harvard receives the notification phone call, they will ask specific questions about the donor and then the staff person will make contact with a pathologist in the donor's local area (hospital, funeral home, etc, depending on where the donor is). Harvard staff will make arrangements for the recovery to take place. All of this needs to be done soon as possible. The NOK or legal representative needs to authorize the brain recovery to take place and this can be done via phone or fax. Since the recovery is done as close in time as possible to the donor’s passing, it does not impact funeral or memorial services. In addition, the entire brain is removed but it is done discreetly so as not to affect the outward appearance of the donor, allowing for a viewing during the memorial service. The brain needs to arrive at Harvard within the 24 hour period after passing.

The NSDA assumes any and all costs, so there is no expense to the family. The family will be asked to complete a questionnaire about the donor and will also be asked to grant permission for the donor’s medical records to be sent to the Brain Bank. The medical history and questionnaire are both important so the Brain Bank can reliably give researchers the correct tissue samples needed for their specific studies. When this information is received and after the tissue has been analyzed by the neuropathologist, the family will receive a copy of the final neuropathology report.

We had some of the leading experts in the spasmodic dysphonia and dystonia community speaking including:

Dr. Gerald Berke, Chairman of UCLA Head and Neck Surgery

Dr. Laurie Ozelius, Associate Professor in Genetics and Genomic Sciences and Assoc. Professor in Neurology at Mt. Sinai School of Medicine in NY

Dr. Christy Ludlow, Professor of Communication Services and Disorders and Director of the Laboratory of Neural Bases of Communication and Swallowing at James Madison University in VA

Presenting on the latest updates in treatments, genetics, and research, these three doctors also participated in a spirited questions and answer session.

After lunch, Dr. Tom Hofmann, Chair of the Psychology Dept. at Hodges University in Florida, talked about the Quality of Life with SD.

A full summary of the meeting will be available shortly. We thank all that attended the meeting to make is a success.

This collaboration is between dystonia patient organizations, including the NSDA, and the research leaders of the Dystonia Coalition to develop and offer this self-reporting patient registry to the dystonia community. "The registry is a fantastic new opportunity for the dystonia community worldwide. It will be extremely valuable for fostering better communication between people who are affected by dystonia and researchers who are trying to learn more about dystonia," said Dr. H. Jinnah, the principal investigator for the Dystonia Coalition.

Although the focal dystonias, including spasmodic dysphonia, have many different manifestations, most experts believe they share a common pathogenesis or mechanism that causes the disorder. The common causes may be a similar gene defect, similar lifetime experiences, or both. Collecting information from different patient populations may help us identify the common features that they may share. This Registry complements the current scope of research for the Dystonia Coalition, a National Institutes of Health supported clinical research effort.

We anticipate that it will take 10 to 15 minutes to complete the survey. However, you may log out at any time and your answers will be saved. Please know your responses will remain confidential. Your participation is completely voluntary. We hope you will register today!

http://www.globaldystoniaregistry.org/

We are pleased to join with the Benign Essential Blepharospasm Foundation, DySTonia, Inc., the Dystonia Medical Research Foundation, and the National Torticollis Association as a member of the DAN – working every day to ensure that the legislative needs of the dystonia community are met and in this case, that dystonia researchers have the opportunity to compete for critical federal research support.

Finding the causes of a complex neurological disorder such as spasmodic dysphonia is an enormous task and one that a number of researchers and clinicians have dedicated their lives to pursuing. To understand the etiology of spasmodic dysphonia, we must rely, to a large extent, on the analysis of donated brains. Through the study of these brains, important clues about spasmodic dysphonia can be discovered. When scientists examine samples from donated brains and compare different age groups, genders and so forth, they can begin to gain a better understanding and knowledge of this complicated disorder, which will lead to development of novel therapeutics and treatments. This, in turn, will offer hope for SD-affected individuals and their families.

How will the tissue be used?
Our Scientific Advisory Board Chairperson, Dr. Christy Ludlow, represents the NSDA on the research committee which reviews applications from researchers requesting brain tissue. Since the majority of the scientific research studies can be carried out on a very small amount of tissue, each donated brain provides tissue that can be used by many different researchers at institutions throughout the U.S. and worldwide. When you enroll as a brain donor, you are giving a very precious gift which will benefit future generations.

How Do I Get Involved?
To enroll in the Dystonia Brain Donation Collective, click here to open up the registration form. Please print it out and either mail or fax it back to the NSDA.

We know that these decisions are not easily made and talking to your family is critical. But we also are confident that further advances can be made in understanding spasmodic dysphonia through this type of research. So we thank you for your consideration of this most generous gift.