What is Spasmodic Dysphonia?

Spasmodic dysphonia (SD), a focal form of dystonia, is a neurological voice disorder that involves "spasms" of the vocal cords causing interruptions of speech and affecting the voice quality. SD can cause the voice to break up or to have a tight, strained, or strangled quality.

NSDA news

NSDA Blog: What to do in Dallas while visiting the NSDA Symposium

We are fast approaching the the annual symposium of the National Spasmodic Dysphonia Association (NSDA) on May 5 (click here to register). We thought that if you’re already coming to Dallas, we should give you a glimpse of what is happening in Dallas during your stay.  After all, it can’t be all business. So we took some time to put together a list of great activities happening in early May. More...

Texas Rangers baseball is playing at home the whole weekend.  The team plays in Arlington Texas which is only a short 20 minute ride from Dallas. They are playing the Red Sox at 7:05 on Thursday through Saturday and have a day game on Sunday and tickets start at only $11.  If you’re travelling from a town like Chicago, where spring has not yet arrived, it will feel great to take in a game.

If musicals are your thing, LesMiserables is playing at the Music Hall at Fair Park.  This is a classic and there are tickets starting at $35.

The Dallas Museum of Art has one of the largest and most impressive art collections in the nation and there is never an admission charge to get in. Yes, it is FREE. Another FREE activity is a visit to Four Corners Brewery Co.  The tour includes free beer tasting.

Adair Saloon at 2624 Commerce Street in Dallas has cheap drinks, legendary burgers and free live music. Check their website for the music schedule.

Dealey Plaza and the Grassy Knoll located in the West End district of downtown Dallas. This is the location of the assassination of John F. Kennedy. From there you can head over to the highly recommended Sixth Floor Museum ($16 on Grouponwhich includes a view from Oswald's supposed shooting location.  I’ve been there and I am not sure the shot that killed him was from the sixth floor.  I’m pretty sure physics doesn’t work that way.  Check it out and you’ll see what I mean.

If you are active, you might want to visit White Rock LakeThis free park will allow you to enjoy the great outdoors with 9 miles of running, biking, and walking trails and some awesome fishing. This 1,015-acre city lake is only 5 miles northeast of downtown Dallas, making it super close to the city.

There is a Six Flags in Arlington Texas so if roller coasters are your thing, you might want to hit this first class amusement park.

Every Thursday evening, the Dallas Arboretum and Botanical Garden hosts concerts by tribute or cover bands. You can bring your own food, drinks, blankets and seating and make yourself comfortable on their huge lawn overlooking White Rock Lake. The shows do tend to sell out though, so purchase tickets in advance ($27 for adults, $25 for seniors, $10 for children). Make it a day by checking out the gardens before the show.

We hope you get a chance to check out the fun stuff in Dallas and if you do, send us some pictures.

World Voice Day 2018 - Cherish Your Voice!

World Voice Day is celebrated every April 16th with the main goal of increasing public awareness throughout the world of the importance of the voice and impact of voice problems. The year’s World Voice Day theme is “Make the Choice to Cherish Your Voice.” On April 1, the NSDA will begin a video campaign on social media channels. Each day we will post a video highlighting an aspect of living with spasmodic dysphonia and related voice conditions. We encourage you to share the videos or ‘like’ them depending on the social media platform you are on. Find the videos here: http://bit.ly/2uzXEQW More...

As anyone with spasmodic dysphonia and related voice conditions can attest, the loss of normalcy in the voice has major implications to all facets of your life. Although the voice is used as an everyday basis of speech, most people realize its importance only when a voice problem arises. By creating awareness, vocal issues can get more acknowledgements, more funding, and more research to promote future treatments or even a cure.

We are also including a sign that offers the message “cherish your voice.”  We hope you will join us by:

1.  Printing the sign by downloading here

2.  Take a picture with the sign

3.  Post it on your own social media on April 16 to show your support of World Voice Day

4.  Link to our Facebook page so we can see them too.

Encourage your friends and family to participate too and support you! You can even do a short video and share why you cherish your voice. This is a celebration of the power of all voices regardless of how they sound!

If you are not on social media, you can still participate! Snap your photo with the sign and email it to us at NSDA@dysphonia.org with your permission to share the photo. We will post them.

We hope you will "make the choice to cherish you voice" and participate in this campaign! We appreciate you continuing to share your stories and participating in advocacy with us. Awareness is a critical measurement that influences early diagnosis, best treatment practices, funding for research and hopefully, cures.  World Voice Day on April 16 helps support these goals!

D1 and D2 Receptors and What Role They May Play in Spasmodic Dysphonia

In our most current issue of Our Voice, there was a reference to a research study which provided some important insight into the brain pathways of people living with focal dystonia. In the summary article “The direct basal ganglia pathway is hyperfunctional in focal dystonia” published in Brain, A Journal of Neurology, (BRAIN 2017: 140; 3179–3190) Kristina Simonyan, Hyun Cho, Azadeh Hamzehei Sichani, Estee Rubien-Thomas and Mark Hallett discussed their findings. More...

The study used high-resolution research tomography to compare D1 and D2 receptors in two dystonias (writers’s cramp and laryngeal dysphonia) to a control group who did not have a dystonia. What they found was that in patients who had either focal dystonia also had increased D1 receptors as compared to the control group. This receptor functions to produce the excitability of the ganglia pathways that control movement. They also found a corresponding under production in D2 receptors. This functions to counteract the D1 receptor. 

We are not brain scientists like the smart people who performed this study, so we created an analogy that helps to put this into perspective. When you have acid indigestion, you have an imbalance in your stomach where your pH level is too low. So you take a Tums or Rolaids which has a higher pH. This combination levels out the pH in your stomach and makes you feel better. Too much D1 and not enough D2 receptors is like that. Heightened D1 is responsible for too much movement and D2 is the counteracting receptor that helps balance everything out, however it was too low in those with the focal dysphonias that they studied as compared to the control groups.

In addition, they found that the imbalance in the D1 and D2 receptors was localized to the portion of the brain that controlled the target movements. The subjects that were living with laryngeal dysphonia had the D1 increase appeared in the larynx area of right putamen and caudate nucleus of the brain. This is the area that controls the movement in the larynx, while the subjects with writer’s cramp, a dysphonia that affects the hand, had an increase in the hand area of bilateral putamen, the area of the brain which controls hand movement.

This study was groundbreaking because it provided a clearer understanding of how D1 and D2 receptors affected the basal ganglia pathways that control focal dystonias. Hopefully, this exciting information leads to treatment options in the future that help control these receptors.

A copy of the article along with a scientific commentary can be downloaded here . Be warned, you might need to be a brain surgeon to understand it, (or at least have a dictionary nearby).

NSDA Blog: Dystonia Advocacy Days

On March 19 and 20, members of the NSDA will again be in Washington D.C. representing spasmodic dystonia as part of the Dystonia Advocacy Network (DAN).  This is a grassroots group that “represents a single, powerful voice on legislative and public policy issues which impact the dystonia community.”  They will visit Capitol Hill and connect with Senators and House Representatives about policies that impact individuals and families of those with dystonia.  This event is the dystonia community’s opportunity to make its collective voice heard throughout the halls of Congress and it is always well attended by individuals with all forms of dystonia.  More...

The DAN continuously works to adopt and advance a legislative agenda which raises awareness of dystonia, educates policymakers about dystonia, addresses patient care issues, and moves research forward.  Of primary importance is funding the important research of the National Institute of Health (NIH).  They have helped researchers make immense progress on spasmodic dysphonia in the past few years and it is important that NSDA contribute our voice and the voice of our members to Advocacy Day because we all want a cure.  Advocacy has become part and parcel of how the government makes informed decisions. With tax cuts and changes impacting the 2018 tax year, it is important that policymakers are informed of the impact that they will have on nonprofits and the team representing DAN will insure that dystonias stay relevant.


[News Archive]

Listen to Voice Samples

Hear audio clips of spasmodic dysphonia, and read about symptoms and treatments using the interactive device below.

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Meet Our Members
Meet Our Members

The NSDA is a grassroots organization working to improve the lives of people with spasmodic dysphonia. This shines through with our members who share their own experiences and knowledge to empower others with SD.
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Our Vision

The vision of the NSDA is to ensure the ongoing viability of the organization that will continue to lead the effort to eradicate spasmodic dysphonia.
NSDA's Core Values

Our Mission

The mission of the NSDA is to advance medical research into the causes of and treatments for spasmodic dysphonia, promote physician and public awareness of the disorder, and provide support to those affected by spasmodic dysphonia.
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Contact Us
NSDA

300 Park Boulevard, Suite 335
Itasca, Illinois 60143
Phone: 800-795-6732
Email: nsda@dysphonia.org
Fax: 630-250-4505