World Voice Day 2020

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 2020 theme for World Voice Day is “FOCUS ON YOUR VOICE.” Awareness is a critical factor that influences early diagnosis, best treatment practices, funding for research and hopefully, cures. World Voice Day on April 16 helps support these goals. Your voice is unique and should be heard today and every day! Join us in raising awareness about spasmodic dysphonia and related voice conditions.

Vocal Challenge Bingo

When the NSDA community comes together, we find common threads. It could be a comment or a situation that seems to occur over and over again. “Bingo cards” have recently become popular on social media and we thought this would be an interesting way to capture and present these shared experiences. Please know, this card is not meant to make light of vocal challenges, but rather to raise awareness and build sensitivity around assumptions made about a person’s voice. This can be used to share with family and friends to start a discussion. It can be helpful in validating your own personal frustrations. And hopefully more people will practice kindness, patience, and empathy knowing that these can make all the difference. 

You can download a PDF version of this card. We also created a template, where you can write your own comments (both positive and negative) about what you have experienced in regard to your voice. If you share with the NSDA, we can even create different versions of it.

New Trailer Released for Short Film on Spasmodic Dysphonia

The trailer for the new short film, Cookie, is premiering on World Voice Day. It tells the story of a young woman, who after losing her voice to a debilitating vocal condition, fights to find it again to pursue her dream of acting. The film’s creator, Shane Hartline, has lived with spasmodic dysphonia since early childhood but it did not stop him from pursuing his goals of acting and now producing and directing. NSDA Executive Director Kimberly Kuman had an opportunity to sit down with Shane recently, and he shared more about his journey with SD, making the film, and engaging the community. Watch the videos here or click on the images below.

Conversations about "Cookie"

Journey with SD

Production of "Cookie"

Discovering the Community

Focus on Your Voice

Repurposing Your Vocal Challenge

Christie DeLuca has lived with spasmodic dysphonia for over ten years. She is also in a unique position being a speech-language pathologist and a researcher with a focus on SD.  Christie has been very generous with sharing her time and knowledge with the the NSDA community from webinars to educational materials. On World Voice Day, you can read about Christie’s personal journey and her message for people living with a chronic vocal condition. She shares, “You can shift your perspective. Repurpose this challenge, this disability, this disorder (whatever you want to call it). It does not have to define you. Grow from it. Learn from it. Let it challenge you and rise to the challenge. Figure out what shifts you need to make.”

SD Reflections

Play Video

Listen to Jyothirmai Narayan read her poem entitled, “SD Reflections.” This poem was the winning entry in the “Celebrating Our Voice” contest sponsored by the NSDA.

Reflections on My Voice

Mary Bifaro has lived with abductor SD since 1987 and has found purpose in her service with the NSDA, serving on the Board along with leading The SD Support Group of Charlotte for over 30 years.  She shared reflections on her voice. 

  • It is my primary means of communication.
  • It allows for self-expression.
  • It is uniquely mine.
  • I have learned to deal with my “broken” voice.
  • When I speak in public, the microphone is my friend.
  • I have learned to seek out quiet environments and attentive listeners.
  • I offer to repeat myself when needed.
  • I briefly explain that I have a neurological voice disorder.
  • I write more because of spasmodic dysphonia...and I really love to write.
  • I have learned humility and empathy because of spasmodic dysphonia.