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

Boston Here We Come!

It is official, the 2019 NSDA Symposium will be held in Boston in 2019. This will be our first symposium in this amazing city, adding to what will already be a jam-packed and very special meeting. The 2019 NSDA Symposium will be held April 27, 2019, at the Hilton Boston at Logan Airport with a great room rate of $149 (plus tax) a night! There is so much to do in this great city you want to start planning now!  More...

At the Symposium, you can look forward to so much, including:

  • The NSDA will be celebrating our 30th Anniversary, which is a huge accomplishment for a small association like ours.
  • We will be launching the newest publication based off our 2018 Share Your Story Contest (details coming soon!). We hope to show off the talents in the categories of essay, poetry and artwork illustrating how spasmodic dysphonia or a related vocal disorder has made you live boldly. We are excited to see what the participants submit and share it with you.
  • Updates from the leading researchers in SD, many who are in Boston and opportunities to participate in research.
  • We will also be celebrating our founding President, Larry Kolasa’s 80th Birthday!

The keynote speaker of the Symposium is also scheduled.  This year, we are honored to have John Edwardson, retired Chairman and Chief Executive Officer of CDW, a leading provider of technology solutions to business, government, education and healthcare organizations.  We cannot wait to learn about his experience living with spasmodic dysphonia.

The 2019 NSDA Symposium will be held April 26, 2019, with a Welcome Reception on April 25, at the Hilton Boston at Logan Airport with a great room rate of $149 (plus tax) a night! There is so much to do in this great city and we will provide details on that and more on the Symposium schedule at a later date. 

We hope you’ll take this opportunity to celebrate, your voice, your friends and your Association.

See you there!

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