News Archive

Sprinting for SD: Steve Gorman Runs Marathon to Raise Funds for the NSDA

Sprinting for SD: Steve Gorman Runs Marathon to Raise Funds for the NSDA

In the early morning hours on May 1st, Speech-Language Pathologist Steve Gorman will set out for a grueling run of 26.2 miles through the streets of Cincinnati, OH. He is participating in the “Flying Pig” marathon and with every step, he is helping to raise funds for research to generously support the National Spasmodic Dysphonia Association. Steve has set a goal of $2,500 and a donor will be matching the funds for a total of $5,000. We hope you will help and support Steve in this endeavor. Donate now! More...

Professionally, Steve is a voice pathologist at the Blaine Block Institute for Voice Analysis and Rehabilitation, a division of Dayton Head and Neck Surgeons, Inc. He received his Bachelor of Science from Bowling Green State University, his Master of Science from University of Wisconsin-Madison, and his Ph.D. from University of Cincinnati. He is active in the Greater Dayton Spasmodic Dysphonia Support Group and was a speaker at the 2010 NSDA Eastern Regional Symposium.

From the Steve:
I guess I can say I have been running almost nonstop for 25 years now. I started by training for a 10-miler when I was a grad student at Wisconsin, the Volksfest Run in Waunakee, WI (the world’s only Waunakee!) That eventually led to trying the marathon: Los Angeles in 1987. I moved to Palm Springs in 1986 after finishing my degree at Wisconsin (really wanted to go someplace warm!) While there I entered San Diego twice (didn’t finish either one due to a knee problem), and Long Beach twice (finished both!) in addition to LA. Then I moved back to Ohio and did a few more: New York City, Pittsburgh, Disney-Orlando, and Memphis. I also ran two 50K (31 miles) ultra-marathons in this same time span.

About this time I started the doctoral program at University of Cincinnati, and my marathoning career went on hiatus. I continued to run for fitness and ran in local 5K and 10K races. After I finished doctoral studies in 2002, I started to think about another marathon, but I didn’t want to do it just for myself. Marathoning can be quite an “all about me” endeavor, and I had done enough of that. My niece ran a marathon a couple of years ago for Team in Training/Leukemia Society. I thought that would be the way to go. I considered doing this last year, but my body kept telling me “you aren’t ready.” I lost 10 lbs. over the summer on a backpacking trip with my two sons, Andy and Ben, and it’s amazing how that 10 lbs. equates into my joints feeling pretty good after a long run! My boys both run on the cross country team at Mariemont High School and their success this past 2 years (back to back league championships, state qualifiers!) further inspired me and my training. Now I feel ready for the physical challenge, as well as the challenge of raising money for the NSDA. Since the Dayton Support Group has been up and running (no pun intended) for over a year now, the indomitable will of the members of the group has given me the will to take on this challenge.

What else can I say about running? I met my wife through running! A physical therapist, with whom I worked in Palm Springs, and I were trying to put together a marathon relay team for the “Jimmy Stewart Relay Marathon” in Griffith Park in LA in 1988. We wanted to put together a co-ed team and needed one more female runner. An occupational therapist on the team knew that her daughter’s 2nd grade teacher was a very good runner and thought she might do it. Well, to make a long story short, it was love at first work-out. Cindy, who married me two years later, was a college All-American in cross country and track and still holds the school and conference record in the 10,000 meters track race (that was in 1985 mind you!) Her fastest time in the marathon, of which she’s run about 30, is 2:52! That’s pretty darn fast for 26.2 miles. I got very used to looking at her back on training runs and races, since she was always ahead of me. I didn’t feel too bad about it because almost all of our running friends were getting the same view, including the men!

I was going to do this last year, but got injured during my training. Now, I’m healthy and looking forward to running on May 1 for the NSDA and the Greater Dayton Support Group!”

Support Steve today!

Action Alert: Department of Defense Research Funding to be Cut

We need advocates from Illinois, New York, and Virginia, to urge your Senators to take action in support of dystonia research. More...

The U.S. Senators from Illinois, New York, and Virginia, have been asked by the Dystonia Advocacy Network (DAN) to formally request that dystonia remains part of the Department of Defense (DOD) Peer-Reviewed Medical Research Program. In order to ensure that these Senators follow through and make this important request, they must hear from their constituents (you). If you are from one of these states, please contact your Senators in this regard to ensure that this effort is successful and DOD-supported dystonia research can continue.

How You Can Help:
Correspondence has been prepared to the Senators from Illinois, Richard Durbin (D-IL) and Mark Kirk (R-IL), New York, Chuck Schumer (D-NY) and Kristen Gillibrand (D-NY), and Virginia, Mark Warner (D-VA) and Jim Webb (D-VA). This correspondence asks these Senators to send a formal request to the Chairman and Ranking Member of the Senate Defense Appropriations Subcommittee, Senators Daniel Inouye (D-HI) and Thad Cochran (R-MS), that DOD-supported dystonia research activities continue in fiscal year (FY) 2012. If you are from Illinois, New York, or Virginia, please send a message to your Senators via the Dystonia Advocacy Network e-mail system or use the draft message to craft your own e-mail, fax, or phone call to your Senator's DC office.

Take Action Now:
Go to www.dystonia-advocacy.org/actionalerts/ and click on "Take Action" on the left side of your screen. Enter your zip code when prompted and send the message to your Senators.

OR

Use the following message as talking points to call your Senators' DC offices, as an outline for a more personalized e-mail appeal to your Senators, or as an outline for a more personalized appeal that you can fax to your Senators' DC offices; please do not send letter via standard mail. To identify the contact information for your Senators go to www.dystonia-advocacy.org/actionalerts/ and enter your zip code in the middle of the screen.

Background:
Each year, the Senate Defense Appropriations Subcommittee drafts an annual Defense Appropriations Bill. This legislation funds the DOD Peer-Reviewed Medical Research Program and includes a list of conditions that are deemed "eligible for study". Only conditions that are on the annual eligible conditions list can receive research funding that year. Dystonia has been included on this list due to the medically-documented link between suffering a traumatic injury, such as through combat operations, and developing dystonia. However, being on the list one year is no guarantee that a condition will be included on the eligible conditions lists again in subsequent years. In order for a condition to be included on the eligible conditions list in a given year, a Senator or Senators must make a formal request to the Defense Appropriations Subcommittee that the particular condition be included.

The DAN has met with the Senators from Illinois, New York, and Virginia and asked them to join together to make request that the Senate Defense Appropriations Subcommittee include dystonia on the eligible conditions list within the FY 2012 Defense Appropriations Bill. These Senators must now hear from their constituents that making this request is important in order to see that they follow through. The Defense Appropriations Subcommittee is currently crafting the FY 2012 Defense Appropriations Bill, so they must receive the request that dystonia be included on the eligible conditions list from their Senate colleagues from Illinois, New York, and Virginia ASAP.

Join us for Dystonia Advocacy Day

Join us for Dystonia Advocacy Day

Members of the NSDA are invited to paritipcate in Advocacy Day sponsored by the Dystonia Advocacy Network (DAN) in Washington DC on May 10-11, 2011. More...

The goal is to raise awareness on Capitol Hill about spasmodic dysphonia and the issues that affect our members including increasing NIH research, access to care, and Medicare reimbursement.

Tuesday, May 10th will feature an afternoon of Advocacy Training and Legislative Review followed by dinner at the Embassy Suites DC Convention Center in Washington, D.C. On Wednesday, May 11th all advocates will spend the day on Capitol Hill. We will conclude on Wednesday by 5:00 pm. In addition to sharing your personal story, you will urge Members of Congress to take action on important initiatives, like funding federal dystonia research activities. The DAN Position Paper, Talking Points and Backgrounder will be sent to you in advance of your trip.

If you are interested in participating, please click here to register. Travel scholarships are available especially for those members in priority states.

NSDA Funds Research Grant

Rita R. Patel, Ph.D., Director of the Clinical Voice Center at the University of Kentucky Research Foundation in Lexington, is the latest recipient of a research grant of $19,885. Dr. Patel's grant is titled "Spatiotemporal Disturbance of Fine Movements in Adductor Spasmodic Dysphonia." More...

The goal of this research is to study the use of a tool called 'high-speed digital imaging' to identify key components of vocal fold motion disturbance responsible for vocal spasms and strained, strangled voice quality in patients with adductor spasmodic dysphonia. The battery of tests that are currently used to clinically test vocal fold vibrations, results in invalid assessments in participants with severe dysphonia, like that of spasmodic dysphonia, due to inherent limitation of the instruments. High speed digital imaging however can capture up to 8000 frames per second; hence can be used to evaluate the small and rapid changes of vocal fold vibrations. Simultaneous laryngeal electromyographic recordings will be performed with high speed digital imaging to investigate the muscle activity responsible for the unique vibratory features observed in participants with spasmodic dysphonia.

Results from this study will assist in clinical decision making regarding treatment with unilateral versus bilateral botulinum toxin injections. The findings of this study will also help investigate the much needed short-term and long-term outcomes of voice quality and vocal fold motion, following botulinum toxin treatment in patients with spasmodic dysphonia.

Charlie Reavis, NSDA's President stated: "Through the hard work of dedicated volunteers along with generous donations from our members and the SD community, we have been able to grow our research program. This grant in particular represents NSDA's commitment to funding young investigators as it is a training grant with NSDA Scientific Director Dr. Christy Ludlow. Ensuring the 'next generation' of researchers will be interested in spasmodic dysphonia is crucial for gaining a greater understanding of our disorder."
Dr. Rita Patel
Dr. Patel (pictured) obtained her doctoral degree and clinical training from the University of Wisconsin Madison. She has 14 years of clinical experience with management of voice disorders and eight years of research and clinical experiences with high speed digital imaging. Her research focuses on understanding vocal physiology with the use of high speed digital imaging across life span. She is the recipient of the ASHA Foundation's New Investigator Research Award and Clinical Practice Research Institute Award for her research on high speed digital imaging of the vocal folds. Dr. Patel served as a topic coordinator for the Voice, Resonance, and Laryngeal section, at the 2008 annual American Speech-Language-Hearing-Association Conference.

In addition to research grants, the NSDA continues to support Project 3 of the Dystonia Coalition's work with Dr. Christy Ludlow on the Validation of a Diagnostic Tool for Spasmodic Dysphonia.

Raise Awareness on Rare Disease Day

Raise Awareness on Rare Disease Day

The National Spasmodic Dysphonia Association is a proud partner for the upcoming Rare Disease Day. More...

This is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year. Learn more.

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.