News Archive

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 

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.

Meeting Summary from the NSDA Eastern Educational Conference

Over 70 people attended the Eastern Educational Conference hosted by the NSDA on November 5, 2016, in Philadelphia, PA. Click here to read the full summary More...

Special thanks to Fred Hosier, NSDA Board Member and Co-Leader of the Southeastern PA SD Support Group, for moderating the proceedings and preparing a summary from the conference. It covers the first four sessions of the meeting which focused on the medical aspects of spasmodic dysphonia. After lunch, participants heard from a speech language pathologist, two support group leaders Cathie Leister (pictured) of the Southeastern PA SD Support Group, and Lois Jackson of the DC Metro Spasmodic Dysphonia Support Group), and a doctor with her own life-changing condition who uses mindfulness meditation and teaches it to others. Click here to read the full summary

Singer with SD Finishes CD with a Little Help from Friend

Tony Johns thought his singing career was over after being diagnosed with spasmodic dysphonia over 20 years ago. More...

But with help from friends, a project that he never thought would be completed, a CD called "Natural" was recently released. Tony was interviewed by the New Castle Herald and he also shared his experiences with the NSDA in this interview.

2016 Midge Kovacs Award Winner: Carol Doles

The 2016 Midge Kovacs Annual Award was presented to Eastern Regional Representative and Central Virginia Support Group Leader Carol Doles. She has done an outstanding job providing support and leadership in the NSDA community, organizing multiple support groups, mentoring leaders and raising awareness. More...

According to Carol, "I am so humbled. I feel so blessed to be a part of the NSDA. I attribute my ability to cope with SD to all the efforts of our organization. It is so natural to want to tell everyone about it!" The award is named after Midge Kovacs from New York who started one of the first SD support groups. She began writing a newsletter called Our Voice to share information about SD as well as experiences of people living with SD. She encouraged all of us with SD to think beyond our individual voice problems. Click here to read more about Carol.

You Are The Expert: SD and Social Situations

With the holidays approaching, we asked "How do you handle social situations, like family gatherings or parties?" We received some great responsed and complied them in a list. Click here to download it. We hope you find it helpful! This is the first version and we will keep adding to it. More...

If you have additional suggestions, please let us know, because all of you are the experts!

Midwest Educational Conference Recap

The National Spasmodic Dysphonia Association hosted its 2016 Midwest Conference on April 30, 2016 in Des Plaines, IL. Click here to a read of summary of the Conference. Also, recordings of some of the session are available on YouTube by clicking here More...

On Friday evening, prior to the conference, a Welcome Reception provided the opportunity for fellowship and support, when people shared their personal experiences. President Charlie Reavisstarted the program on Saturday morning with an overview of the mission of the NSDA. The first sessions of the Conference focused on the medical aspects of spasmodic dysphonia with Dr. Robert Bastian presenting an overview of the disorder, and Dr. Gerald Berke discussing treatment options. Several researchers, some who are funded by the NSDA, including Drs. Kristina Simonyan, Mo Chen, Michael Hammer, and Rita Patel, shared their different approaches to better understanding spasmodic dysphonia, After lunch, Dr. Laura Froeschke talked about how spasmodic dysphonia can affect your identity, and Speech Language Pathologists Jan Potter Reed and Brienne Ruel provided voice therapy tips and recommendations in break-out sessions. One person commented, "It was great meeting so many people who understood what I was going through and not being embarrassed to speak," and another said "What I enjoyed was the variability of approaches to SD research, various treatment options, and integrating the problems of SD in our lives." Our thanks to all who attended! 

Why Siri and SD are not always Compatible

For many people with spasmodic dysphonia, the phone can be a source of dread, but then add voice recognition programs to it, and the stress level jumps. Freelance writer, Emily Mullin, highlighted these challenges in an article featured in Scientific AmericanMore...

Emily shared, "Having been diagnosed with spasmodic dysphonia when I was 17, I understand just how frustrating it can be to communicate people using my voice, and interacting with technology can be even more exasperating. These devices are designed to recognize voice patterns and sounds made by the typical user. But speakers with spasmodic dysphonia are not the average user. You may not think you need to use your iPhone's Siri or your smart TV's voice controls, but as technology advances, more and more of our electronic devices, cars and even homes are increasingly relying on voice activation and voice controls. For most people, voice recognition systems offer convenience and freedom from buttons, remotes and keyboards, but for individuals with speech and vocal disabilities like spasmodic dysphonia, this technology can be alienating."Also featured in the article was Dystonia Advocacy Network Chair Emma Mattes. Thank you, Emily, for continuing to raise awareness about spasmodic dysphonia! Click here to read the article