News Archive

Use Your Voice to Help Raise Awareness about Spasmodic Dysphonia

September is Dystonia Awareness Month.  We ask you to join us in raising awareness about spasmodic dysphonia. Click "more" for ideas for how you can help with outreach.

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Ways to Raise Awareness about Spasmodic Dysphonia

Tell your friends and family about spasmodic dysphonia. People may be unsure if they should ask about your voice, so by sharing your story you can help them better understand. 
 
View and share videos from the NSDA YouTube channel. There are videos from past NSDA Symposiums from some of the leading experts on SD. 
 
Follow and share social media post from the NSDA. Be sure to add your story to make it more personal. We are on Facebook, Twitter, and Instagram.
 
Use NSDA Awareness Tools, including cards, a button, and wristband, to help share information about SD. 
 
Reach out to your local healthcare professionals and provide materials from the NSDA so more people can find support. Email us to request materials that you can distribute. 

Educate those in your community by approaching local media outlets about your SD story. 

Connect locally through NSDA Support Groups or Area Contact Persons. September meetings are listed below, and there are more in October! None in your area? Contact us to start one or to become an Area Contact.

Let us know how you are educating others about spasmodic dysphonia. Together, we will share our voices to speak out for spasmodic dysphonia! 



 

2017 Symposium Summary

Over 100 people attended the 2017 NSDA Symposium in Nashville, TN, on Saturday, May 6, 2017. On Friday night, attendees were greeted by the bluesy sound of a slide guitar played by NSDA Support Group Leader Wendy Garrison. That was followed by the sharing of personal stories at the Welcome Party.  Saturday included presentations from SD medical experts, utilizing mindfulness as a tool, and several breakout sessions which focused on living with SD, the impact of SD on family and friends, and abductor SD.    More...

Kevin is the President of Hancock Lumber Company and was diagnosed with spasmodic dysphonia in 2010. Five years after, he published his book "Not for Sale: Finding Center in the Land of Crazy Horse" about his personal experience with SD and how this seeming liability turned out to be a blessing for him. Kevin sold copies of his book at the Symposium with the proceed going to the NSDA. Kevin's book can be ordered hereClick here to read the Symposium summary, and be sure to view the presentations on the NSDA's YouTube channel at www.youtube.com/user/NSDA300. Special thanks to NSDA volunteer Andy Harness for recording the meeting! 

Top left: Gwendolyn Sims Davis, Fred Hosier, Dennis Delgado, Jan Lant, Stephie Mendel, and David Barton. Top right: Group photos of Symposium attendees. Bottom Left: President Charlie Reavis presents Keynote Speaker Kevin Hancock with an award. Bottom center: Dr. Teresa Kimberley, SLP Melissa Kirby, Dr. C. Gaelyn Garret, Charlie Reavis, and Dr. Gerald Berke. Bottom right: Wendy Garrison shares her music at the Friday Welcome Party.


Warren Bandel joins the Board

We are excited to welcome Warren Bandel to the NSDA Board. Having lived with spasmodic dysphonia since he was in 6th grade, Warren is dedicated to the Mission of the NSDA. He has served as an Area Contact Person since the mid-90s. In 2011, Warren attended his first NSDA Symposium and Leadership Day in Orlando, FL. Inspired by the personal stories and the positive experience, Warren's motivation to do more grew.    More...

Then in 2015, Warren organized his first NSDA Benefit Concert in Rochester, MN. This annual event has continued to grow and even travel, with a concert in Mankato, MN. Warren hopes to expand fund-raising for the organization in his new role on the Board. Click here to read more about Warren.

SD Career Corner

Professionally, Dorothy Tannahill-Moran is known as the "Introvert Whisperer," helps people to find career success by providing unique, actionable career advice. Dorothy shares her professional advice but with a twist of her personal understanding of having spasmodic dysphonia." Click here to read her article, "When Your Voice Creates a Roadblock to your Career; Find Another Path. More...

Dorothy also has had spasmodic dysphonia for about 20 years, first noticing it when she was making a presentation to her CEO. "I wasn't nervous but my voice had a definite "warble" to it. It took another seven years for it to get to the point where I knew something was wrong. I guess I'm lucky and grateful that it never occurred to me to do anything differently because of my SD. I have viewed it as just another challenge life has thrown my way but I do acknowledge that for many people with SD, it is a life-altering journey." 

Personal Profile: Dr. Gary Lea

Dr. Gary Lea, a clinical psychologist, wrote about his personal experience with spasmodic dysphonia including treatment with botulinum toxin (Botox®) injections and his decision to have the SLAD-R (Selective Laryngeal Adductor Denervation-Reinnervation) procedure in 2007.  Read his full story by clicking here. More...

He shared, "My counselling clients would, at times, question my vocal spasms, and I would explain that I had a voice disorder, and that it was neither painful nor infectious. My clients seemed to find that explanation acceptable, it never became a big deal and I do not believe that I lost any clients because of it. On the contrary, I was able to draw parallels between my own voice problems and their psychological or medical difficulties, as a way of demonstrating that all of us, sooner or later, are given challenges in our lives that can either defeat us or provide opportunities for self-improvement." Read his full story by clicking here. 

 

A Very Special Birthday Gift

We are so thankful to share in the birthday celebration of NSDA Board Member,Stephie Mendel. Organized by her sons, David and Doug, donations in honor of her birthday were made to the NSDA, and she received the "gift" at a family party. She was overwhelmed by the number of people who contributed. Over  $37,000 for NSDA research was donated from over 25 families plus Sophie (her adorable dog). More...

To say she was touched is an understatement. "There is not a gift I would have rather received. I was just stunned. I appreciate my family so much and am so proud of my sons," shared Stephie. We appreciate the generous support! 

Stephie at her birthday celebration. 
Top row: Derron Mendel, Holly Mendel, 
Jeanne Samuelson, and Rona Hokanson 
Bottom row: Doug Mendel, Stephie Mendel, 
and David Mendel 

New Awareness Materials

New Awareness Materials

The NSDA is excited to introduce some new tools help raise awareness about spasmodic dysphonia. A new button, awareness cards, and visor card for your car are available. Click here to order the new materials!    More...

This button is a creative way to let others know about the spasmodic dysphonia. It measures 1.75" x 2.75" and was designed by Andrea Butteworth who has SD. Andrea shared that the goal of these buttons is help many feel more confident and open the door for conversations about our unique vocal disability. Click here to read Andrea's story.

Explaining that you have a voice disorder can help make a situation less stressful. Three new business size cards provide an easy way explain to others about spasmodic dysphonia and raise awareness. These are designed to keep in your wallet and show people to help explain why you might be having difficulty talking. For cards to give to people to explain what spasmodic dysphonia is, order our 3-fold card.

This visor card (5.5” x 8.5”) will help explain what spasmodic dysphonia is, especially in stressful situations. Special thanks to Deb Lindsey who suggested this idea to the NSDA.

Click here to order the new materials! 

Investment in Research: NSDA grant yields larger return

The National Spasmodic Dysphonia Association funded a seed grant for Dr. Teresa Kimberley from the University of Minnesota to investigate how the brain areas involved in vocalization are connected to each other, and with the other areas of the brain, and how those connections are different in people with SD compared to people without SD.   More...

Our investment in this research has allowed the collection of essential preliminary data that was used to submit a request for a grant to the National Institute of Deafness and Communication Disorders (NIDCD) in the National Institutes of Health (NIH). We are thrilled to report that Dr. Kimberley has been awarded $1.5 million dollars to continue this important research on spasmodic dysphonia!  The grant is entitled, A Multimodal Assessment of Neurophysiology in Focal Dystonia, and we will update you on progress and recruitment! Thank you for your support to make this work possible.


Finding Your Voice in the Workplace

Professionally, Dorothy Tannahill-Moran is known as the “Introvert Whisperer,” helping people to find career success by providing unique, actionable career advice. Dorothy will be sharing her professional advice but with twist of her the personal understanding of having spasmodic dysphonia. Click here to read her first article, “Own Your Voice Professionally but Don’t Let It Define You,” More...

Dorothy also has had spasmodic dysphonia for about 20 years, first noticing it when she was making a presentation to her CEO. “I wasn’t nervous but my voice had a definite “warble” to it. It took another seven years for it to get to the point where I knew something was wrong. I guess I’m lucky and grateful that it never occurred to me to do anything differently because of my SD. I have viewed it as just another challenge life has thrown my way but I do acknowledge that for many people with SD, it has been a life-altering journey.”  


SD and the Americans Disabilities Act

Many individuals with voice disorders like spasmodic dysphonia may not realize that their conditions can be classified as disabilities under the law, entitling them to workplace accommodations and time off to pursue medical treatment.  More...

The Americans with Disabilities Act Amendments Act of 2008 (ADAAA) resulted in changes to the legal definition of disability and substantially affected how those with voice disorders may qualify for reasonable accommodations under the law. However, there has been little guidance and a lack of awareness about these changes in the voice literature. In this article, Dr. Derek Isetti examines the Americans with Disabilities Act of 1990 (ADA), the changes made in 2008 (ADAAA), and how the law applies to individuals with voice disorders. Click here to read the article.