News Archive

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

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

2016 Dot Sowerby Pioneer Award Recipient

Karen Adler Feeley is the 2016 recipient of the prestigious Dot Sowerby Pioneer Award for outstanding individual contribution to the NSDA. As an author, moderator, learning consultant, and support leader, she has generously used her creativity, communication and planning skills to promote education about spasmodic dysphonia. More...

Karen Feeley serves the NSDA as Special Projects Coordinator; is the author of Easier Done than Said: Living with a Broken Voice; has been a presenter at numerous symposiums and Leadership Days. The award was initially announced via phone to Karen by the awards namesake, Dot Sowerby but recently, President Charlie Reavis was able to present it to her in-person(pictured above). Karen shared, "I'm thrilled to receive the award named after such an impressive woman and grateful to all the folks there who do so much to make a difference to so many.

With your support we did it! We surpassed our Challenge Goal

My sincere appreciation to all who supported the NSDA in helping us achieve our Challenge Goal! We established a pledge level of $75,000 with a target of $75,000 in contributions for a total of $150,000. I am excited and delighted to report that we achieved $78,000 in contributions giving us a total for the Challenge of $153,000! Your support keeps driving the Mission of the NSDA forward. More...

Our plans for 2016 include funding more research, hosting three Educational Seminars so we can reach more people, launching a redesign of the NSDA website and the implementation of the new database system, along with webinars to keep you updated and connected. You are the NSDA and we thank you for all YOU do!

Charlie Reavis, President

Finding My Own True Voice: Kevin Hancock

Finding My Own True Voice: Kevin Hancock

President of Hancock Lumber Company, a sixth-generation family business, Kevin Hancock (pictured right) has been living with adductor spasmodic dysphonia since 2010. He recently authored the book, "Not for Sale: Finding Center in the Land of Crazy Horse" which is his memoir that traces his journey deep into Indian country, and even deeper into his own soul. More...

In the current issue of Our Voice, Kevin shares some insights on this project and how it impacted his journey with spasmodic dysphonia, "At the time, I was searching for my voice. I was searching for both a path to regain strength in my outer, speaking voice as well as a path to deeper connectivity with my inner voice-the essence of who I am. I believe both voices are connected and SD patients have a unique opportunity to make that connection due to the manner in which the disorder provides a chance to stop, think, and listen." 
Kevin says, "My book explores the notion that we are all here on this earth seeking our own true voice. We all come from a tribe and that tribe pulls on us to act in certain ways. At the same time, each soul is here to individuate - to find its true callings - and, that is only possible when we transcend the busyness and momentum of our own tribes to listen to what our souls are saying. Spasmodic dysphonia is an invitation to listen. It took me quite a few years to realize this, and I doubt I ever would have learned this lesson without SD." 

Click here to read the full interview and learn more about his new book.