News Archive

New Poetry Book to Raise Funds for the NSDA

New Poetry Book to Raise Funds for the NSDA

The National Spasmodic Dysphonia Association (NSDA) is pleased to share with you a new opportunity to support the organization. Stephanie Mendel is graciously donating 100% of the proceeds from her newly published poetry book, BARE BRANCHES to the organization. Read why Stephanie is so passionate about poetry and supporting the NSDA. Thank you, Stephanie, for your generosity! More...

Dear Potential Reader,

Twenty-two years ago I was diagnosed with spasmodic dysphonia (SD) and ever since have had a soft voice, with breaks and a tremor, which make it difficult to verbally communicate with people.

Those of us with SD have SD; we aren't SD. We find outlets for our skills and creativity that extend in directions where verbal interaction isn't a top priority, but we need to have better voices to lead normal lives. I'm a nationally published poet, my first book, MARCH, BEFORE SPRING, is now in its third printing.

Wanting to combine my writing with finding a cure for spasmodic dysphonia, I am donating all profits from my second book, BARE BRANCHES, to the National Spasmodic Dysphonia Association to find better treatments and a cure for this neurological voice disorder. BARE BRANCHES contains two poems about living with spasmodic dysphonia.

If you decide to purchase a book, you have my appreciation for helping the NSDA move forward its effort to fund SD specific research, provide support for SD patients and their families and increase awareness of spasmodic dysphonia. Order your copy today!

With warm thanks,
Stephie Mendel
NSDA Board Member
San Francisco / North Bay SD Support Group Leader

NSDA Announces Celebrating Our Voice Contest

For the 30th anniversary of the National Spasmodic Dysphonia Association, we invite you to join us in celebrating our collective voice by sharing your story in a new contest. We are looking for original pieces that highlight determination, resilience, and courage while living with spasmodic dysphonia and related voice conditions like vocal tremor and muscle tension dysphonia. More...

You can submit in any of three categories:




All submissions deemed appropriate by the Book Committee will be published in our Celebrating Our Voice book, which will be released in 2019 in conjunction with our 30th Anniversary Symposium. Top winners in each category will be listed on the book cover. 

We are excited to celebrate your voice and have you share how you have been inspired to live boldly with spasmodic dysphonia or a related voice condition. We can’t wait for your submissions!

Click here for more details. Click here to enter.

World Voice Day 2018 - Cherish Your Voice!

World Voice Day is celebrated every April 16th with the main goal of increasing public awareness throughout the world of the importance of the voice and impact of voice problems. The year’s World Voice Day theme is “Make the Choice to Cherish Your Voice.” On April 1, the NSDA will begin a video campaign on social media channels. Each day we will post a video highlighting an aspect of living with spasmodic dysphonia and related voice conditions. We encourage you to share the videos or ‘like’ them depending on the social media platform you are on. Find the videos here: More...

As anyone with spasmodic dysphonia and related voice conditions can attest, the loss of normalcy in the voice has major implications to all facets of your life. Although the voice is used as an everyday basis of speech, most people realize its importance only when a voice problem arises. By creating awareness, vocal issues can get more acknowledgements, more funding, and more research to promote future treatments or even a cure.

We are also including a sign that offers the message “cherish your voice.”  We hope you will join us by:

1.  Printing the sign by downloading here

2.  Take a picture with the sign

3.  Post it on your own social media on April 16 to show your support of World Voice Day

4.  Link to our Facebook page so we can see them too.

Encourage your friends and family to participate too and support you! You can even do a short video and share why you cherish your voice. This is a celebration of the power of all voices regardless of how they sound!

If you are not on social media, you can still participate! Snap your photo with the sign and email it to us at with your permission to share the photo. We will post them.

We hope you will "make the choice to cherish you voice" and participate in this campaign! We appreciate you continuing to share your stories and participating in advocacy with us. Awareness is a critical measurement that influences early diagnosis, best treatment practices, funding for research and hopefully, cures.  World Voice Day on April 16 helps support these goals!

Use Your Voice to Help Raise Awareness about Spasmodic Dysphonia

September is Dystonia Awareness Month.  We ask you to join us in raising awareness about spasmodic dysphonia. Click "more" for ideas for how you can help with outreach.


Ways to Raise Awareness about Spasmodic Dysphonia

Tell your friends and family about spasmodic dysphonia. People may be unsure if they should ask about your voice, so by sharing your story you can help them better understand. 
View and share videos from the NSDA YouTube channel. There are videos from past NSDA Symposiums from some of the leading experts on SD. 
Follow and share social media post from the NSDA. Be sure to add your story to make it more personal. We are on Facebook, Twitter, and Instagram.
Use NSDA Awareness Tools, including cards, a button, and wristband, to help share information about SD. 
Reach out to your local healthcare professionals and provide materials from the NSDA so more people can find support. Email us to request materials that you can distribute. 

Educate those in your community by approaching local media outlets about your SD story. 

Connect locally through NSDA Support Groups or Area Contact Persons. September meetings are listed below, and there are more in October! None in your area? Contact us to start one or to become an Area Contact.

Let us know how you are educating others about spasmodic dysphonia. Together, we will share our voices to speak out for spasmodic dysphonia! 


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 

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.

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.

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.

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. 

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!