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
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 American. More...
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.