News Archive

Academy Award Winning Actress Lupita Nyong'o Shares Statement with the NSDA to Help Shed Light on

Prior to the release of Jordan Peele’s horror film, Us, lead actress Lupita Nyong'o shared the inspiration for the sound of the voice of Red, her doppelgänger character was inspired by the voice of Robert Kennedy, Jr. who has spasmodic dysphonia. The NSDA has been working with Ms. Nyong’o’s team and appreciates the thoughtful statement she provided to NSDA explaining her intentions of discussing spasmodic dysphonia in conjunction with the movie. More...

Statement by Ms. Nyong’o to the National Spasmodic Dysphonia Association

To the Community with Spasmodic Dysphonia:

I would like to take this opportunity to expound more fully on my relationship with spasmodic dysphonia in my work as it appears in Jordan Peele's film, Us. As some of you may be aware, I play two characters, Adelaide, who many have labeled “good" and Red, who many have labeled "bad." My process as an actor leads me to find ways into the most human and real parts of every character I play, steering clear of any judgement of them as being “good" or "bad," "righteous" or "evil," "pleasant" or "creepy." In portraying the specific trauma of my character, Red, I was inspired in part by hearing Robert F Kennedy Jr speak at an event. His voice and the condition that he has, became the catalyst to my creative process and research which included other influences like laryngeal fractures, vocal cord hemorrhages and my own experience with vocal injury. As part of this exploration I spoke with a number of people who suffer from spasmodic dysphonia. I learned how difficult it is to live with the disorder and it struck me.  I am aware of the struggles and frustrations, the misunderstandings and misdiagnoses that accompany having the disorder. 

In discussing spasmodic dysphonia publicly as an inspiration, I never intended to demonize or vilify those with the disorder.  In fact, after getting to know some people with it, I hoped it would help to shed light on a difficult disorder that is not well known by the public. I am sorry to all those who may have been hurt or offended by my mention of the condition, as my intention was never to present this condition in a sinister light. 

Ultimately, Red's voice is a composite of influences and a creation of my imagination. In fact, the final voice does not sound like spasmodic dysphonia. I crafted her with care and love. I in turn extend my love to you now, in the hope that you are able to receive it and understand my motivations beyond the brief sound bites that the news may otherwise deliver to you.

With Deep Respect,
Lupita Nyong’o

The NSDA applauds all efforts to raise awareness about spasmodic dysphonia. “We thank Ms. Nyong'o for her efforts to bring attention to this rare neurological voice disorder and appreciate her intention was to help our cause. Since learning of the movie’s release, the NSDA’s goal has remained the same, to educate and raise awareness about spasmodic dysphonia and its challenges in a positive way. This has been an opportunity to expose a much larger population to the impact of this voice disorder,” shared NSDA Executive Director Kimberly Kuman. 

All this awareness has also shed light on what is really needed for people with spasmodic dysphonia  -more research for this rare voice disorder -  including determining its causes, finding better treatments, and, ultimately, a cure.

False Narrative of Condemning of Movie "Us"

The NSDA would like to clarify that in many of the recent articles, it stated that NSDA condemned the movie, Us. This is false. Our goal from the start was to acknowledge that spasmodic dysphonia was being connected to the movie, express concern about the terms being attached to the sound of the voice (from media stories) and raising awareness about its impact. More...

A media outlet used NSDA quotes out of context, tying us to another a group, and said NSDA "condemn the decision" to use this voice. This is false but many media outlets ran it. In the end, we want awareness. We want reseach. We want a cure for spasmodic dysphonia.

Spasmodic Dysphonia: More Than Just a Voice in a Movie

Actress Lupita Nyong'o recently shared that the sound of the voice of Red, her evil doppelgänger character in the new Jordan Peele movie, Us, was inspired by the voice of Robert Kennedy, Jr.* Mr. Kennedy suffers from spasmodic dysphonia, a neurological disorder that affects the voice. The most evil part of this voice condition is the life-changing impact it can have on those coping with it daily. It can rob a person’s ability to speak and communicate clearly. More...

Normally, when a person speaks, the vocal cords vibrate in a synchronous manner. When a person has spasmodic dysphonia, the vocal cords will go into a spasm resulting in a very strained, broken, or whisper voice. The brain is sending the wrong signal and voice is impacted depending on whether the muscles in the larynx adduct (move together) or abduct (pull apart). 

One of the toughest parts of having a disability is that people make assumptions based on the way you walk, talk or act, sometimes with little understanding of what is causing it. While this portrayal may raise much-need awareness about spasmodic dysphonia, it is important to understand that a voice disorder can significantly affect an individual’s social life, emotional well-being, and career. In a recent survey of people with spasmodic dysphonia, one participant shared, “Your voice is you. Your intelligence, emotions, abilities all come through in your voice… without it you become invisible.” 

We understand that hearing the unique sound caused by symptoms of spasmodic dysphonia was the spark of inspiration for the voice of this character. What it is difficult for us, and for the thousands of people living with spasmodic dysphonia, is this association to their voice with what might be considered haunting, wilted or a result of emotional trauma especially since spasmodic dysphonia is a neurological disorder. We applaud the work of Ms. Nyong'o and this opportunity to educate about this rare voice condition, but for the Spasmodic Dysphonia community, this disorder does not end when the movie is over. 

Spasmodic Dysphonia Quick Facts

Cause: Exact cause is unknown but based on current research, it is a neurological focal form of dystonia

Multiple Forms of Spasmodic Dysphonia: Adductor, Abductor, Mixed

Other voice conditions including vocal tremor and muscle tension dysphonia may be present

Common Treatments: Voice Therapy, Botulinum Toxin Injections, Surgical Interventions

Prevalence: Estimated 1 person per 100,000 in the United States, but SD is often is misdiagnosed or undiagnosed so prevalence may be higher

Age of Onset: Typically 40-to-60 years-old but can occur even younger and often more common in women

*Reference to Spasmodic Dysphonia and Robert Kennedy, Jr. https://www.nytimes.com/2019/03/20/arts/lupita-nyongo-us.html

Register now for the 2019 NSDA Symposium

The National Spasmodic Dysphonia Association invites you to attend the 2019 NSDA Symposium on Saturday, April 27, in Boston, MA! We will be celebrating the 30th Anniversary of the NSDA. Join us for fellowship, education, and fun. The event will host some of the leading experts in the field of spasmodic dysphonia and related voice conditions while providing the opportunity to meet others who share a similar experience. Learn more and register by clicking here. We hope you can join us in Boston!   More...

What can you expect if you attend this meeting?

Meeting others and sharing YOUR story about living with a voice condition at the Welcome Party on Friday evening prior to the symposium, and, if a first-time attendee, sign up for the SD Ambassador Program;

Updates on the latest developments, including cutting-edge research, on spasmodic dysphonia from experts in the fields of laryngology and speech and language pathology;

Your questions answered during panel discussions with the medical presenters.

Participate in research studies for spasmodic dysphonia.

Launch of the new NSDA book, Celebrating Our Voice.

After a day of learning, relax with us on Saturday evening for an optional dinner after the symposium. Plan to stay longer and explore Boston with us! We have an optional City Tour of Boston on Sunday morning. And then in the afternoon, take in a baseball game at historic Fenway Park with the 2018 World Series Champions Boston Red Sox! 

Confirmed Medical Speakers: 

Robert Bastian | Gerald Berke | Andrew Blitzer | Glenn Bunting | Thomas Carroll | Christie DeLuca | Gregory Grillone | Christopher Honey | Teresa Kimberley | Laurie Ozelius | Michael Pitman | Franco Ramon | Kristina Simonyan | Phillip Song

Keynote Speaker: John Edwardson
Retired Chairman and Chief Executive Officer of CDW and Former President of United Airlines 

Research Opportunities
There will be ample of opportunities to interact with scientists working on discovering the causes and mechanisms of spasmodic dysphonia as well as to directly participate in research studies benefiting the understanding of this disorder and the development of new treatment options while attending the symposium. More information will be provided to interested attendees after registration.

Latest Issue of Our Voice Available for Download

Our latest 36-page issue of the NSDA newsletter, Our Voice, is packed with updates on research, treatment (including the article on Type 2 Thyroplasty), NSDA updates, personal stories of success, and so much more! We hope you enjoy it and share it with your family and friends, too! Click here to download it.   More...

Giving thanks to You!

During this wonderful time of year, we celebrate the people in our lives who give us the support and love we need to make a difference. We want to take this opportunity to thank you for supporting the National Spasmodic Dysphonia Association! We hope you like this special 2018 Thank You Video highlighting some of the great people and programs that make our NSDA community stronger. So many contribute in different ways, and we are grateful to all of them!  More...

Together, we will continue to work to improve the lives of people affected by spasmodic dysphonia and related voice conditions through research, education, awareness and support.  

Susan Beck Joins the NSDA Board

We are pleased to welcome Susan Beck to the NSDA Board of Directors! Susan is the current Support Group Leader of the Greater Knoxville Area SD Support Group. She has participated in various events including representing the SD community multiple times at Dystonia Advocacy Day in Washington, D.C. and attending NSDA Annual Symposiums. She strives to do everything that she can to support the NSDA's mission to increase awareness of SD and to work toward eradicating SD forever. Click here to read more about Susan. More...

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 27, 2019, with a Welcome Reception on April 26, 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!

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.