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

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.

NSDA Blog: Advice from CEOs with SD-Embrace It!

Recently, we interviewed two CEOs with SD, Kevin Hancock from Hancock Lumber and Jaime Schmidt from Schmidt Naturals.  In both interviews, the focus was on how SD has impacted their individual leadership styles.  We asked the question, “what advice would you give to someone living with SD?”  We were was surprised to get the same answer from both Schmidt and Hancock…”Embrace your SD”More...

We can all understand the expression, but what does it really mean?  I often use a thesaurus to really understand the intrinsic meaning of a word so here’s some of the other words that can be used in place of embrace:  hug, include, incorporate, accept, welcome, support, adopt, enfold, comprise, take on.  It’s interesting that those are some of the same concepts that I would also include in the concept of self-love.


I am a realist. The unexpected diagnosis of SD probably threw your life out of balance. It likely impacted you emotionally, professionally, and in your personal relationships. There’s no doubt that you felt at least once or twice or a million times, that things were worse for you. But I have noticed a theme from the folks with SD who participate and contribute to the Association (NSDA), they all express some sort of acceptance of their SD. And that acceptance forces them to think differently about the events and circumstances of their lives. Schmidt admits that she plans business travel and speaking events around her Botox® treatments.  She didn’t quit doing speaking engagements, but she has had to adapt.   

So as usual, I went to Google for help on this topic. Here is some advice from a few of the over 4 million Google results on self-love with a disability.

·         Find and make great friends. There is a saying, “friends are the family you choose.” The good ones will offer support and accept you just the way you are.

·         Focus on your strengths not your weaknesses. Don’t dwell on what you cannot do, think about what you can and enjoy doing, then do it more often. Imagine the confidence you’ll build when you’re repeatedly successful.

·         Don’t measure yourself against anything else, not even YOU before YOU had SD. The problem with measurements is that there’s always some that fall below the baseline. Don’t compare, it’s your normal that all that matters.

·         Don’t be so hard on yourself. You are already an extremely strong person. You solve problems most people cannot, you know how to adapt, you know how to live with SD.

·         Connect with people. People will be curious about your voice, even if they do not say anything. Once you tell them about your disorder, they will admire you, listen more closely when you speak, and whether you realize it or not, you will become an inspiration. 

·         Find a supportive community. There are support groups with people who have SD, just like you. Find one on the NSDA website.

Embracing something can lead to growth, helping you experience life in a new way, with a new perspective, that can transform your life in ways you never thought possible. And Hancock admits, “In losing a piece of myself, I found a better me”.






Benefit Concert for Spasmodic Dysphonia

Our Savior's Lutheran Church, in Sun Prairie, WI, will host a benefit concert at 3 p.m. on Sunday, Feb. 18, to benefit the National Spasmodic Dysphonia Association (NSDA).  The concert is part of a series of fundraising events featuring Warren Bandel and the Classic Brass Quintet.  Bandel starting having symptoms back in sixth grade.  In high school he received a diagnosis of spasmodic dysphonia (SD a neurological disorder that impacts the larynx and affects a persons speech.  While the disorder is not life threatening it is life altering and there are approximately 50,000 who suffer from it. More...

Fast forward many years and Warren now serves as a board member for the NSDA and knew he wanted to do more to help find a cure.  Using his love of music to make a difference, he held his first benefit concert in 2015.  He has since added more concerts including the one on Sunday and has other scheduled in Rochester and Mankato, MN.

The first for 2018, will be held Sunday, Feb 18 at 3:00 at Our Savior Lutheran Church, 550 Lincoln Dr, Sun Prairie, WI 53590. Admission is free, but a freewill offering will be accepted to benefit NSDA.  If you're nearby, we hope to see you there.


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