News Archive

2010 Challenge Grant Goal Surpassed

Thank you to all you who contributed to our 2010 Challenge Grant. The goal of $63,000 for the 2010 Challenge was not only reached but surpassed by $4,000 for a total of $68,000, raising $130,000 with the matching grant. More...

Your ongoing support helps us to reach out to new and existing people with SD, implement new programs, spread awareness and fund crucial research aimed at identifying the underlying cause, better treatment, and, ultimately, a cure for this disorder.

Scientific Updates

Abnormal Activation of the Primary Somatosensory Cortex in Spasmodic Dysphonia: An fMRI Study 
Kristina Simonyan, M.D., Ph.D., and Christy L. Ludlow, Ph.D. 
Published in Cerebral Cortex (2010): March 1 More...

Abstract: Spasmodic dysphonia (SD) is a task-specific focal dystonia of unknown pathophysiology, characterized by involuntary spasms in the laryngeal muscles during speaking. Our aim was to identify symptom-specific functional brain activation abnormalities in adductor spasmodic dysphonia (ADSD) and abductor spasmodic dysphonia (ABSD). Both SD groups showed increased activation extent in the primary sensorimotor cortex, insula, and superior temporal gyrus during symptomatic and asymptomatic tasks and decreased activation extent in the basal ganglia, thalamus, and cerebellum during asymptomatic tasks. Increased activation intensity in SD patients was found only in the primary somatosensory cortex during symptomatic voice production, which showed a tendency for correlation with ADSD symptoms. Both SD groups had lower correlation of activation intensities between the primary motor and sensory cortices and additional correlations between the basal ganglia, thalamus, and cerebellum during symptomatic and asymptomatic tasks. Compared with ADSD patients, ABSD patients had larger activation extent in the primary sensorimotor cortex and ventral thalamus during symptomatic task and in the inferior temporal cortex and cerebellum during symptomatic and asymptomatic voice production. The primary somatosensory cortex shows consistent abnormalities in activation extent, intensity, correlation with other brain regions, and symptom severity in SD patients and, therefore, may be involved in the pathophysiology of SD.

Lay summary: Although it is well known that patients with spasmodic dysphonia (SD) have uncontrolled spasms in their laryngeal muscles that interfere with speaking, it is not know what abnormalities in the brain produce those spasms. We wanted to find out what abnormalities occur in the brain that might only appear when patients are speaking and might not appear when patients are doing other types of sounds that do not produce spasms in the laryngeal muscles. Also by comparing brain function when patients are speaking and having voice breaks with brain function in persons without spasmodic dysphonia we also could determine what might be producing spasms in the laryngeal muscles in persons with spasmodic dysphonia.
The only difference in brain function between persons with spasmodic dysphonia and persons with normal speech that seemed to be associated with spasms occurred in the laryngeal muscles seemed to be in the primary sensorimotor cortex (the part of the brain associated with laryngeal muscle and laryngeal sensory control), the insula, and the superior temporal gyrus (the part of the brain associated with listening to speech). Surprisingly these differences in brain function seemed to occur even when persons with spasmodic dysphonia were producing other types of sounds that do not produce spasms in the laryngeal muscles. In addition, the patients had reduced brain function in regions at the inner part of the brain; in the basal ganglia, thalamus, and cerebellum. I Further, increases in brain function found in the part of the brain associated with laryngeal muscle and laryngeal sensory control were related to the severity of voice breaks in speech in the persons with adductor spasmodic dysphonia.
Finally, the brain function differences between persons without spasmodic dysphonia and persons with adductor or abduction SD were similar except that the increases in brain function in the part of the brain associated with laryngeal muscle and laryngeal sensory control was greater in persons with abductor spasmodic dysphonia. Overall we found that increases in function in the sensory cortex that has to do with laryngeal feedback to the brain was the most impaired function in SD and may play an important role in the generation of muscle spasms in spasmodic dysphonia.

FDA Approves Xeomin for the Treatment of Cervical Dystonia and Blepharospasm

Merz Pharmaceuticals has recently announced that the Food and Drug Administration (FDA) has approved Xeomin® (botulinum neurotoxin type A) for the treatment of adults with cervical dystonia or blepharospasm. The United States is the 20th country to approve Xeomin® for these focal forms of dystonia. Xeomin® is now one of four botulinum neurotoxin products approved for use by the FDA. More...

Merz Pharmaceuticals, LLC is a part of Merz, Inc., a wholly owned U.S. subsidiary of the Merz Group of Companies and was established in 1995 to develop and commercialize products for the Merz Group. Areas of therapeutic focus include neurology, dermatology, and podiatry.

For more information on Xeomin® and Merz, including full prescribing information, visit http://www.merzusa.com/

Research Opportunity in Spasmodic Dysphonia

A new research study for Adductor Spasmodic Dysphonia are currently recruiting in the New York City area. More...

We are looking to better understand motor control in adductor spasmodic dysphonia (ADSD) by examining the voice changes that occur when people speak using different vocal pitches. Research will be conducted at New York University or in approved Ear, Nose, and Throat offices in the New York area. The time commitment will be one visit lasting less than 2 hours.

Participant criteria includes adults diagnosed with adductor spasmodic dysphonia with no history of surgery to treat ADSD (e.g. recurrent laryngeal nerve surgery), either no history of the use of botulinum toxin injections or in the past 3 years or more, no diagnosed reflux, no diagnosed neurological disorders/conditions besides ADSD that could affect speech production (e.g. Parkinson's disease, brain injury, stroke, essential tremor), no diagnosed respiratory disorders (e.g. chronic obstructive pulmonary disease, asthma), no diagnosed speech disorders (e.g. articulation disorder, dysarthria), no diagnosed voice disorder other than ADSD, normal language ability, and native speakers of American English.

If you are interested in participating or learning more, please contact:

Primary Investigator: Heather Henry, M.A., CCC-SLP, doctoral student
Phone: 917-848-6954
Email: hmh261@nyu.edu

Faculty Sponsor: Dr. Celia Stewart

The NSDA provides information on this research study in order to further the scientific understanding of spasmodic dysphonia, but the NSDA does not endorse or recommend participation in this or any other medical research studies.

Dystonia Awareness Week: June 6-12

Dystonia Awareness Week occurs from June 6-12, 2010. Dystonia is the third most common movement disorders after Parkinson's Disease and Tremor, affecting more than 300,000 people in North America. Dystonia is a neurological movement disorder that causes muscles in the body to pull or spasm. More...

Spasmodic dysphonia, otherwise known as laryngeal dystonia, is a focal dystonia involving the muscles that control the vocal cords. Spasmodic dysphonia makes speaking difficult because the voice has either a strained, hoarse, whispered quality or a low breathy quality.

Please take the opportunity of this weeklong event for Dystonia Awareness Week to help raise awareness about dystonia. Your help in awareness raising can be as simple as handing out an NSDA trifold wallet card or directing people to the NSDA website at: www.dysphonia.org.

The NSDA is part of the Dystonia Advocacy Network (DAN). The DAN brings together various dystonia organizations in order to advocate on issues of common concern to those affected by dystonia.

Message from NSDA's New President - Charlie Reavis

It has been a rewarding experience serving the National Spasmodic Dysphonia Association as a member of its Board of Directors for several years, and it is my great pleasure to now serve as President of the Board. Our past President David Barton has served the NSDA in this position since 2005 with dedication, commitment to the NSDA mission and excellent leadership. On behalf of the NSDA Board and the spasmodic dysphonia community, I thank David for his outstanding service and significant accomplishments. More...

My voice problems became severe in early 2000 and I was fortunate to find an otolaryngologist and speech-language pathologist in 2001 who diagnosed my voice condition as adductor spasmodic dysphonia. They played the NSDA video and I immediately knew that was what I had and that there were others with the same voice condition.

As I am sure all of you felt, I was relieved to have a diagnosis but disappointed to also learn that the cause was unknown and the treatments only temporary. I explored the NSDA website in an attempt to learn more about SD but soon discovered that the knowledge was limited and very little research had been conducted since this was a rare condition with a very small patient population. This only fueled my desire to find a way to do something, so when then President Dot Sowerby contacted me and asked if I would join the NSDA Board, I accepted.

I have been actively engaged with the Board and working closely with David and the other Board members to grow the organization and provide more support and services to the SD community. We have made significant strides in serving our mission of increasing awareness of SD, educating the public and medical community about SD, providing support for SD patients and their families and pushing research to find the cause of SD that will eventually lead to a cure for our voice condition. I am extremely optimistic about the future of NSDA and our plans to enhance the support and services to the entire SD community and continue to drive SD-specific research.

During our recent Board meeting and Leadership Day in Denver, I shared my vision for NSDA:

"Ensure the ongoing viability of the Organization that will continue to lead the effort to eradicate Spasmodic Dysphonia."

One thing I have learned and admire about people with SD is their perseverance, dedication and a wonderful stubbornness that anything is possible. I am convinced that working together with one loud and clear NSDA voice that my vision for NSDA can become a reality. I look forward to working hard on your behalf and with your help and support to accomplish our mission and strive to achieve our vision. With your help and support we can accomplish our mission and strive to achieve our vision. I look forward to working hard on your behalf.

Thank you for your continued commitment and support!

Charlie Reavis
NSDA President

The Congressionally Directed Medical Research Program Adds Dystonia to the List

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We have seen many opportunities to advance research in the field of spasmodic dysphonia with the funding of the first NSDA independent grant and the establishment of the Dystonia Coalition. Now, we add another funding mechanism for dystonia/spasmodic dysphonia research!

The National Spasmodic Dysphonia Association, a proud member of the Dystonia Advocacy Coalition (DAC), is pleased to announce the inclusion of dystonia on the list of diseases eligible for funding through the Congressionally Directed Medical Research Program (CDMRP). This achievement, reached after several years of tireless, collaborative efforts by the advocates of the DAC, now allows for members of the dystonia research community to apply for funds in support of their work. In particular, we would like to thank Jim Anderson from St. Pete's, Florida, for his efforts in working on this issue and assembling a team of people to ensure dystonia, and specifically, spasmodic dysphonia, would be included in this funding.

The Congressional Directed Medical Research Program is funded through the Department of Defense via annual Congressional legislation known as the Department Appropriations Act (the support is in response to requests by consumer advocates and disease survivors). CDMRP will issue a program announcement for 2010 funding opportunities, including dystonia.

NSDA joins with the other DAC member organizations, the Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the Dystonia Medical Research Foundation, and the National Spasmodic Torticollis Association, to advocate for all persons affected by dystonia and supports a legislative and policy agenda that meets the needs of the dystonia community.

Organizational members of the DAC will now work to promote this program to the dystonia research community to help advance dystonia research.

NIH Funds $6.2 Million Dollar Grant for Focal Dystonias

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Officials at the National Institutes of Health (NIH) have announced the funding of a five year clinical research grant award aimed at forming a multicenter Dystonia Coalition to advance clinical research on primary focal dystonias, including cervical dystonia, spasmodic dysphonia, blepharospasm, and others. Leading the Coalition will be H. A. Jinnah, M.D., Ph.D., Professor of Neurology and Human Genetics at Emory University in Atlanta, GA.

The $6.2 million award will allow the Dystonia Coalition to cultivate a better understanding of the primary focal dystonias and find better therapies. This includes projects to develop a better understanding of their natural history, establish instruments appropriate for monitoring disease severity in clinical trials, and develop proper diagnostic criteria. The creation of a biorepository to store biological samples to support future research is also planned, making these resources available to investigators worldwide. The Coalition will bring together the most committed dystonia researchers in North America and Europe, along with dystonia patient advocacy groups.
“Dystonias are rare and devastating diseases, with limited and sometimes inadequate treatment options,” explains Dr. Jinnah. “Funding of the Dystonia Coalition will allow us to address unmet needs in focal dystonia research, as well as make resources available to other investigators that will help to advance the field.”

One component of this grant is aimed at developing an accurate diagnostic test for identifying patients with spasmodic dysphonia who do not have other voice disorders. This was identified as the highest priority need when a research planning conference was held at the NIH in June 2005. The report of that meeting provided the impetus for this project and contained a pilot study of a proposed diagnostic test.

The study will take place over five years and has three parts. In the first, the diagnostic test will be evaluated at four voice centers (Washington University at St Louis; Medical College of Wisconsin in Milwaukee; New York Center for Voice and Swallowing Disorders associated with Columbia University, and Emory University in Atlanta) to determine whether otolaryngologists, speech pathologists and neurologists at each center can use it accurately and reliably for determining which patients have spasmodic dysphonia and which patients have other voice disorders such as psychogenic dysphonia, muscular tension dysphonia or vocal fold paresis.
In the second phase it will be determined if medical professionals not specializing in voice can also use it to accurately and reliably diagnose spasmodic dysphonia. In the final phase, a double blind treatment study will determine if this new test can accurately quantify changes in severity of the disorder for conducting clinical trials in spasmodic dysphonia. If successful this study will provide a new instrument to serve as a basis for increasing research on spasmodic dysphonia, as we will then be able to identify persons with spasmodic dysphonia and determine the severity of their voice disorder.

“This funding will allow us to develop the first test for accurately identifying who has spasmodic dysphonia and will allow us to measure treatment effects. This will provide the base from which to increase research attention to further understanding and improved treatment for spasmodic dysphonia,” says Christy Ludlow, Ph.D., Scientific Director of the National Spasmodic Dysphonia Association. The NSDA is proud to be part of the research coalition and hopes it will bring a greater interest to this field of research.

The NSDA is dedicated to advancing medical research into the causes of and treatments for spasmodic dysphonia, promoting physician and public awareness of the disorder, and providing support to those affected by spasmodic dysphonia through symposiums, support groups, and on-line resources. The NSDA is comprised of people with SD, healthcare professionals, volunteers, friends, and families. It is the only organization dedicated solely to the SD community. Together, we continue to pursue our mission through awareness, advocacy, and outreach; help to improve the lives of people dealing with SD; and to work to support and encourage research in order to bring a greater understanding to this disorder.

Patient Advocacy Groups that are members of the Dystonia Coalition include:

• American Dystonia Society
• Bachmann-Strauss Dystonia & Parkinson Foundation
• Beat Dystonia
• Benign Essential Blepharospasm Research Foundation
• DySTonia, Inc.
• Dystonia Medical Research Foundation
• National Spasmodic Dysphonia Association
• National Spasmodic Torticollis Association
• Tyler's Hope for a Dystonia Cure
• We Move

Spasmodic Dysphonia and Quality of Life Research Study Results

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By Thomas B. Hofmann PhD, LCSW, CAPP

Some of you participated in the “Spasmodic Dysphonia and Quality of Life” survey in 2008. In that study, several types of spasmodic dysphonia were eventually compared in order to see if there was a difference in a person’s perceived quality of life after botulinum toxin treatment. At first, it was suspected that people with Abductor SD would score lower on a quality of life survey than those with Adductor SD. In previous studies, Adductor SD was more effectively treated with botulinum toxin than Abductor SD, though both types did show improvement after this treatment according to expert voice rating.

In this study, there was no statistically significant difference in the quality of life scores between the two types. In an effort to explain the result further, it was found that age of the participants and the amount of time that they had been dealing with SD had a small effect on quality of life scores, but not enough to explain the result. The severity of the SD, the presence of significant side effects of SD, and gender, did not appear to influence the result to any statistical significance.

However, the combined types, including mixed SD (Abductor and Adductor), or any type with an accompanying tremor receiving botulinum toxin treatment, did have a significantly lower quality of life score than those with only Abductor or Adductor SD alone. This result is also worth repeating as it may have implications for botulinum toxin treatment, or other adjunct therapies.
On a separate note, while reviewing the body of previous SD studies, this writer came across a study by de Jong, Cornelius, Wuyts, Kooijman, Shutte, Oudes and others in 2003. They studied 76 teachers with a voice disorder, and found that it was important to know where the person was in their grieving process of accepting the voice disorder in order to assess personal adjustment and appropriateness of coping strategies to the voice disorder.

The researchers used a model of grief with three stages. In stage 1, the voice disorder is experienced as a “Threat”, and is usually accompanied by a desperate search for help, isolation, depression, anxiety and exhaustion. Stage 2 is called “Falling into the pit”, in which the person starts to lose the emotional urgency to resolving their voice disorder, and comes to more emotional acceptance and less desperation about it. Finally, those who make it to stage 3 find “Renewal”, in which a person finds maximum recovery in physical, functional, psychological and social domains. This can include contributing positively to helping others who struggle with the same condition, or actually any human condition.

Sherbourne, Meredith, Rogers and Ware found in 1992 that social support provided to persons with a chronic illness actually helped them maintain their physical health. Combining the finding from the de Jong et al. study with the Sherbourne et al. study, members of the NSDA are to be congratulated for effectively being in the process of working out their own struggle with SD so that others can be helped to improve their own quality of life as well. Additionally, the whole idea of what a person’s adjustment stage to SD is also deserves further study.

Botulinum Toxin Update

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The Food and Drug Administration (FDA) recently took measures to ensure that botulinum toxin products are used safely and appropriately. A mandatory black box warning label will be required for all botulinum toxin products sold in the United States. This will be applicable to currently approved formulations as well as new ones when they come to market in the future.

This is the most serious type of warning for prescription drug labeling, and it was added because of reports of serious muscle weakness along with speech, swallowing, and vision impairments in children with cerebral palsy. These children were being treated for spasticity with large doses of the product. While it was used off-label, similar effects have been reported in adults treated for both approved and unapproved uses.

In addition, all manufacturers of botulinum toxin products must implement a Risk Evaluation Management Strategy (REM) to ensure that physicians use the products knowledgably and patients must be informed of potential risks and provided with new information about the products. These actions are also taken to ensure that physicians know that botulinum toxin products available are measured in different units and therefore cannot be used interchangeably.

Currently, there are three botulinum toxin products approved for the treatment of various forms of dystonia. This includes Botox� manufacturedby Allegan (botulinum toxin type A), Myobloc� manufactured by Solstice (botulinum toxin type B), and most recently Dysport�, manufactured by Medicis Pharmaceutical Corp and Ipsen.

Dysport� has been recently approved for the treatment of cervical dystonia as well as an anti-wrinkle treatment. It is expected to launch for cervical dystonia during the second half of 2009. It has been used for both medical and cosmetic purposes in Europe and other parts of the world for over 10 years.

Another type A botulinum toxin, Xeomin�, manufactured by Merz Pharmaceuticals, is currently being reviewed by the FDA for the treatment of blepharospasm and cervical dystonia.

The NSDA recommends discussing any safety concerns you may have with a healthcare professional who is trained and experienced with injecting with botulinum toxin for spasmodic dysphonia.