News Archive

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...

NSDA Announces Celebrating Our Voice Contest

For the 30th anniversary of the National Spasmodic Dysphonia Association, we invite you to join us in celebrating our collective voice by sharing your story in a new contest. We are looking for original pieces that highlight determination, resilience, and courage while living with spasmodic dysphonia and related voice conditions like vocal tremor and muscle tension dysphonia. More...

You can submit in any of three categories:

Essay

Poem

Artwork/Illustration

All submissions deemed appropriate by the Book Committee will be published in our Celebrating Our Voice book, which will be released in 2019 in conjunction with our 30th Anniversary Symposium. Top winners in each category will be listed on the book cover. 

We are excited to celebrate your voice and have you share how you have been inspired to live boldly with spasmodic dysphonia or a related voice condition. We can’t wait for your submissions!

Click here for more details. Click here to enter.

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!

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.


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.

NSDA Blog: My Story: Carolyn Bolz’s first Toastmaster Meeting

In our January 5 blog, we wrote about resolution making and using this time to work on some aspect of your life impacted by SD. I ran across this article from a couple of years ago in which Carolyn Bolz recounts the first day she attended a Toastmasters meeting. Toastmasters are an international organization with over 350,000 members trying to improve their speaking and leadership skills. They offer a supportive learn-by-doing environment that allows people to achieve their goals at their own pace. Every Toastmaster journey begins with a single speech. This is the story of Carolyn’s first Toastmaster speech with SD. More...

Have you ever done something that made your heart race and your palms sweat? That’s how I felt when I attended my first Toastmasters meeting. Since I have different forms of dystonia, including spasmodic dysphonia, I was worried about how the group members would react, especially if I ended up giving a speech. When I went to my first Toastmasters meeting, I drove halfway there, made a U-turn, and came back home. Facing a roomful of strangers and possibly having them stare or make comments about my dystonia symptoms caused me to feel anxious and self-conscious. The following week, I decided to try again.

This time I was able to drive to the real estate office where the Toastmasters meeting was held. I walked into the small auditorium at the back of the building, and then took a seat. A dozen men and women were milling around, talking with one another. All I knew about Toastmasters was that it was an organization where members gave speeches. Since I am self-employed and work at home, it seemed like a good place for me to socialize for an hour each Thursday afternoon. I also was curious about the speeches. Before my SD and other dystonia symptoms had worsened, I worked as an elementary school teacher and was used to talking in front of a group.

When the Toastmasters meeting began, the club president introduced the members who had assignments that week. This included the Timer, the “Ah” counter (who kept track of the number of “ah”s and “um”s in each speech), evaluators, and others. I was mesmerized as I listened to the first speaker give an introductory talk about herself. As she walked to the podium and again after she finished her speech, everyone applauded. The member who evaluated her presentation was kind and encouraging.

“Does anyone else want to speak?” the club president asked. “Our other scheduled speakers weren’t able to come today so we have plenty of time.” Without thinking, my hand shot up. “May I give an introductory speech?” I asked in my raspy voice. “This is my first time at a Toastmasters meeting, but I’d like to participate if it’s okay.” The President looked surprised, but nodded. I walked up front and began telling about myself. I enjoyed sharing with the group even though my head started bobbing, my right arm trembled, and my voice became squeaky and very weak. I paused a moment, took a deep breath, and then finished my short speech. On the way back to my seat, I appreciated the audience’s applause. I could tell by the smiles on the members’ faces that I had done well. The club President remarked how impressed he was that I had given my first speech without any preparation or notes.

At the end of the meeting, the members voted for Best Speaker, Best Table Topic (impromptu speech), and Best Evaluator. “Carolyn, you won the blue ribbon for today’s Best Speaker!” the president announced. I gasped as everyone applauded. I felt grateful that the club members had been able to look past my unusual voice, tremors, and bobbing head to concentrate on my speech instead. After the meeting, I joined Toastmasters. I was happy that I had not let SD and my other forms of dystonia keep me from taking a chance and trying something new. In fact, I went on to represent my club at the district level and won the 1st place trophy for best Table Topic (impromptu speech).