News Archive

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.

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.  

SD Educational and Awareness Events

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Raising awareness and educating about spasmodic dysphonia is a priority for the NSDA, and we were ably represented at the following conferences/events:

The NSDA exhibited at the Fall Voice Conference in Pittsburgh, PA, and supported four travel grants (top photos from left): 
  • NSDA Board Member Fred Hosier with Dr. Elizabeth Erickson-DiRenzo, Stanford University Medical Center, Stanford, CA
  • Dr. David Francis, Vanderbilt Voice Center, Nashville, TN, with NSDA President Charlie Reavis
  • Dr. Brent Richardson, Bastian Voice Institute, Downers Grove, IL

Board member Dot Sowerby (right bottom) represented the NSDA at the American Speech Hearing Association Conference in Denver, CO. Joining her at the booth was Shannon Porter (pictured center with Dot) and Bill Dickerson.


 
Educational events included:

  • Four members of the Greater Metro DC Support Group, Leader Lois Jackson, Shannon Moorman , Paul Maiers, and Pete Senden, shared their story at the Brain Health Fair sponsored by the American Academy of Neurology in Washington DC. Pictured center left are Lois and Shannon
  • Chicago Support Group Leader Wendy Kerr along with Victor Chears and Executive Director Kimberly Kuman participated in a 2-hour class for Graduate level Speech Pathology students at Elmhurst College in Elmhurst, IL. Pictured bottom left are Wendy, Victor, and the professor for the class, Dr. Laura Froeschke.
We thank all of our representatives who help educate and raise awareness about spasmodic dysphonia!  

Benefit Concert for Dystonia

Congratulations to the Dystonia Support & Advocacy Group of San Diego County for hosting its 4th Dystonia Benefit Concert with Juice Newton and the Trio Group on October 1st.    More...

This sold-out show was a fun and entertaining evening benefiting the NSDA and the DMRF. Paul Fowler has been instrumental in organizing these events because of his long-time friendship with Juice and his connection with Martini's Above Fourth where the event took place. Our thanks to Paul, along with Support Group Leader Martha Murphy, for all of their efforts to ensure another successful event! Pictured is Juice Newton (center) with Martha and Paul on either side of her along with her band.

Dot Sowerby's Senior Games 'Fun Raiser' to Support SD Research

NSDA Past President Dot Sowerby, 82 years young, has been running for over thirty years. She started with a jog around the block, but now, she is participating in the National Senior Games. This year’s competition will be held in Minneapolis, MN, from July 5-11, and Dot will be competing in the Running Long Jump, 100 Meter Dash, 200 Meter Dash, 400 Meter Dash, 800 Meter Run, 1500 Meter Run, and 5K Run (3.1 miles). When she returns again this year, this avid competitor will be also raising funds for spasmodic dysphonia research. More...

Besides Dot's age and athletic ability, she has a rare neurological voice disorder called spasmodic dysphonia (SD) which causes the vocal cords to spasm shut making communication very difficult. “Around the time I started running, I began having problems with my voice. At first I felt scared and panicky that I would never have a normal voice again. I remembered the running support group that fostered me, so I looked for voice support groups. It linked me up with the National Spasmodic Dysphonia Association. My friends in the voice support system encouraged me and taught me ways to cope and medical options to look into,” Dot shared.

Dot was recently honored at the NSDA Symposium with establishment of the “Dot Sowerby Pioneer Award” to recognize her many accomplishments in raising awareness about spasmodic dysphonia. Once again, Dot pushes forward, utilizing this opportunity to help raise funds for the NSDA. Please join us in supporting Dot by making a donation to the National Spasmodic Dysphonia Association by going to www.dysphonia.org/donate.php and click on the "Please credit this donation to" and select Dot Sowerby's Senior Games Fund-Raiser.

My early days of running were difficult but I persisted and slowly improved.  I receive support from a local running group. There were not many females running in the 1970’s, as most women my age did not grow up participating in track.  I eventually ran a half marathon (13 miles).

In 2010, I started competing in the local Senior Games. I had to qualify in my city, then went to state games and earned the right to participate in National Senior games. Over time, I have won about 60 metals locally and nationally within my age group

Running helps me physically, mentally, and spirituality. When you run, you get endorphins, in your body, which makes you feel good. I also listen to music when I walk or run and feel like I get a “double shot” of endorphins.

Life does not always give awards for overcoming challenges. My voice achievements are just as important as my winning metals for running. You can progress beyond obstacles in your life and try new activities. I hope others will be encouraged to keep moving forward!