News Archive

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.


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.

 

NSDA Blog: 30 Years of Spasmodic Dysphonia Treatment and Research

Drs. Andrew Blitzer, Mitchell F. Brin, Kristina Simonyan, Laurie Ozelius, and Steven J. Frucht (all pictured above), provided a review of over 30 years of experience and research studies involving patients with laryngeal dystonia (LD). This paper, recently published in The Laryngoscope, summarized what has been learned and why it could be important to the diagnosis, treatment and maybe a future where LD is controlled. More...

Included is what has been learned from over 25,000 botulinum toxin injections for the treatment of LD symptoms, what we have learned from brain imaging, and an update the sodium oxybate study. Dr. Blitzer, as one of the pioneers of treating spasmodic dysphonia with botulinum toxin, shared some of his insights in the summary. Thank you to all of the contributors for their dedication to gaining more understanding about this complex voice disorder! Click here to read the summary. Click here to read the full paper.