News Archive

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.

Visit to Local NSDA Support Group Help Woman Find Her Voice

Yvonne Kaminski was urged by her daughter, Jessica, to attend a meeting of the local NSDA Spasmodic Dysphonia Support Group in Milwaukee, WI. It was there that she received encouragement to give treatment another try and was referred to Dr. Joel Blumin. More...

The results from that visit made the local news, including a story in the publication, "On Milwaukee" and an interview with the news station, WTMJ, in Milwaukee. Yvonne also shared her experiences with the NSDA in this interview.

NSDA Honors Diane Rehm

After 37 years on National Public Radio, NSDA Honorary Director Diane Rehm retired from hosting her radio show in December.  More...

To mark this special occasion, DC Metro SD Support Group Leader Lois Jackson presented a book of letters from our dedicated SD community to express appreciation for her courage, leadership, inspiration, willingness to participate in NSDA conferences, and publicly "carry the banner" raising awareness of SD. Lois shared that Diane was very touched and appreciative of the gift and sentiments. You can still hear Diane as she just started a podcast called "On My Mind." Click here to read more about Diane's career on NPR.

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!

The Complexities of Spasmodic Dysphonia brought to light in the Wall Street Journal Article

A recent article in the Wall Street Journal entitled, "The Brain Wiring Behind a Frustrating Speech Disorder," is helping to raise awareness about spasmodic dysphonia. 
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With the focus on the complexity of understanding SD, it features researchers who are approaching SD in different ways, including Dr. Kristina Simonyan. Also included is the personal side of SD. Tommy Johnson, who has lived with SD for over three decades talks about the challenges of SD and how he is contributing to the research. Click here to read the article online or download a PDF. We encourage you to share the article to help continue to raise awareness!

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.