“Leadership is about making others better as a result of your presence and making sure that impact lasts in your absence.” (Francis Frei, Harvard Business Professor). Valley of the Sun Co-Leader, Esther Zack, commented: “I like to think that my mission is to make living with SD a possibility! Area Contact Leader from GA, Sue Payne, reflected: “Prior to losing my voice, I was in leadership and my favorite part of the job was developing people. Getting them to understand their strengths and creating relationships with them. Nothing is better than that! With SD, it’s helping folks realize how they can still have success and tweak their strengths.”

Chicago Leader, Kate Blaker, commented on the summer beach gathering she hosted: “There were 3 members plus 2 husbands. It was a beautiful day, and we enjoyed the breezes off Lake Michigan at Montrose Beach in the city. For three people who have trouble talking, we sure chatted together for a long time! Over three hours!”

Portland Co-Leaders, Janet Gensert and Peter Nagelvoort have stepped down and we thank them for their past service. Fortunately, Janet will continue to serve as an Area Contact Leader from OR. Teresa Dunn has stepped down as Leader of the St. Louis group and we thank her for her past service. We are pleased that Teresa will continue to serve as an Area Contact Leader from MO.

The counseling agency where Chicago Leader, Kate Blaker, works was in full support mode and joined other community organizations to offer therapy and care for those affected by the tragic shooting in Highland Park on July 4, 2022. According to Kate, “my community continues to be deeply affected by the tragedy of this event.”

Area Contact Leader from MT and Arizona Co-Leader, Vicki Orazem, contacted her local otolaryngologist about the name change of our organization from NSDA to Dysphonia International; they put up a poster with her contact information in their office. In addition, Vicki has contacted a speech-language pathologist at a local university; they are making plans for Vicki to serve as Guest Speaker at an upcoming class. Another outreach made by Vicki was to two state senators asking for their support of the funding for the inclusion of dystonia as a condition eligible for study through the Department of Defense Peer Review Medical Research Program for Fiscal Year 2023.

Area Contact Leader from NC, Bonnie Simpson, raises global awareness about spasmodic dysphonia (watch here), her voice journey (watch here), and our organization (watch here) on Tik Tok where her account name is divabylaw. Bonnie discusses her 23-year experience of living with a voice disorder and how she has embraced her vocal image.

Past President from NC, Dot Sowerby, continues to raise awareness about spasmodic dysphonia and related voice conditions by speaking to book clubs. She shares her story and sells copies of her book, ‘Speechless No More: A Life Transformed By A Voice Disorder’, which is available for purchase here.

Support Network Director from NC, Mary Bifaro, created a topic which she used both virtually and in-person. It is entitled, “Caterpillar to Butterfly Metamorphosis: Our Dysphonia Journey”. View the PowerPoint here. Participants weighed in on the butterfly quotes and how the changes in metamorphosis might apply to their individual dysphonia journeys.

On a Zoom call, ask one of your frequent participants in advance to describe their SD journey, how they are involved in our organization, and tips and techniques that they find effective in coping with voice struggles. Dysphonia International has introduced new programming for our community, including more webinars. If you have a topic to recommend for upcoming webinars, please let Kim Kuman know at: kkuman@dysphonia.org. 

When you shop at smile.amazon.com, you can designate NSDA as your charity to support; AmazonSmile will donate 0.5% of your eligible purchases to NSDA. Sign up here.

We have formalized and expanded our outreach to SLP classes. We know that your voice is the best educator to help increase the understanding of voice disorders and you can have a long-lasting impact on future practitioners. Thanks to a committee chaired by Board Member from KS, Dorothy Tannahill-Moran, we have resources and documents, and individualized support, to help you develop the best presentation for you. If you are interested in becoming a presenter, find more information here or sign up here.

Update from Nicole Leitner, Program and Operations Manager:

“In total there have been 31 people submit forms to sign up to be a Guest Speaker. Twenty two individuals attended an orientation session and have the login instructions for the SharePoint resource site. Overall, reactions seem to be positive from the SharePoint site, with comments like “the website will be a great resource” and that the site does “an excellent job of organizing this valuable info for our SD community!” In terms of presentations, there is one presentation scheduled for October 7th, another in the process of being scheduled and a request for a pre-recorded presentation. Additionally, another 5 people have indicated that they will be reaching out to universities near them, so hopefully there will be a few more to confirm a date soon too.” 

He is also a member of the Education & Awareness Board Committee chaired by Board Member from KS, Dorothy Tannahill-Moran. In addition, he served on the Committee for the Guest Speaker Program for SLP Students which was also chaired by Dorothy. Rod did three excellent videos for the SharePoint resource site. In them, he walks people through the three steps involved in speaking to SLP classes – Research, Preparation, and Presentation. Rod describes the positive experience he had while presenting at Cal State University. According to Rod: “I hope that I can share my experience with others who may not be comfortable or would like more information about spasmodic dysphonia or its treatment.”

Area Contact Director from MI, Dennis Kaszeta, stated: “Area Contact Leaders play a pivotal role and important connection to new people and our Area Contact Leaders will help us grow our community.” Area Contact Leader from NC, Rebecca Cole-Turner, described the 24 monthly Zoom calls that the Joint NC groups have been hosting since July 2020: “We try to keep our meetings interesting, informative, and helpful to everyone.” Area Contact Leader from NC, Bonnie Simpson, recently served as guest speaker for the second time at this group and her topic was diversity. Area Contact Leader from UK, Wayne Parry, is a member of the Education & Awareness Board Committee, which is Chaired by Board Member from KS, Dorothy Tannahill-Moran. Area Contact Leader from MO, Teresa Dunn, stated: “I want to help those who would like a personal contact with another person with SD. I think that having SD has helped me be more compassionate to others who have special challenges.” Area Contact Leader from the UK, Helen Thompson, commented: “I feel isolated experiencing severe muscle tension dysphonia and have not found support locally. I attended the 2022 Dysphonia International Virtual Symposium, and the theme was about belonging to the community regardless of the type of voice related condition. I attended the virtual webinar with Dr. Bastian, and I attended the NC virtual support group meeting. This was the first time that I have met people with a voice disorder. There must be a need to connect people together with shared experiences. I am interested in participating in Walk for Talk and raising awareness and funds.”

Area Contact Leader from TX, Stephanie Morrison, commented: “I have suffered from spasmodic dysphonia for years and have journeyed through the heartbreak of diagnosis, the roller coaster of the Botox treatment process, and have finally reached a place of acceptance. SD still impacts (and will always impact) my daily life and is not easy. I have come to terms with this condition and no longer let it define me. I freely talk to people about it and no longer feel the shame around it that I once did.” Area Contact Leader from OR, Janet Gensert, described her role in this way: “I feel strongly that it helps to meet another person with a voice disorder, especially in the beginning stages of diagnosis and treatment. I have done a lot of that over the past 10 years as a co-leader (in person, on Zoom, or FaceTime). People are so grateful to hear someone else’s experience and have the opportunity to ask questions and share fears.” 

Area Contact Director, Dennis Kaszeta, hosted a quarterly ACL meeting on August 13th that was attended by 20 ACLs. Watch the full meeting here. Topics included statistics on domestic and international ACLs, promotion of Walk for Talk, overview of the Guest Speaker Program, and an ACL spotlight (read more below).

The next ACL quarterly meeting will be held Wednesday, November 9th at 7pm Eastern. Register here.

ACL from CA, Stephie Mendel, was featured in the last ACL Quarterly Call. She spoke compellingly about the emotional changes that people go through on their SD journey. She stated the importance of acknowledging this. She prefers having a new contact come to her home for privacy and a quiet environment. She discussed the shame, frustration, anxiety, and embarrassment that often accompany an SD diagnosis. Stephie likes to point out to new contacts all that Dysphonia International has to offer. She goes over our extensive website at dysphonia.org. She shares her tips on what had worked and hasn’t worked for her. She shares information on local healthcare professionals who treat SD. She talks about all the research trials which are going on. She mentions the books that Dysphonia International has published. She speaks about the many Zoom support calls which we host that anyone can join. She shows the section on our website about various treatment options. She emphasized the wonderful feeling of family that can be experienced by attending a Dysphonia International symposium. There, you will hear panels of experts in the SD field and meet others who also have SD. Stephie wants people to realize that in our community, ‘no one is alone’. She believes in listening attentively to new contacts and meeting people where they are. For a complete write-up, click here or to watch Stephie click here.

As a non-profit, we appreciate the support of every donor. It is important to take note of our fiscal information as outlined on our website: Fiscal Information.

Area Contact Leader from MN, Warren Bandel, continues to ‘trumpet for our cause’ with his benefit concerts. In August, he held another concert and nearly $1,400 was raised. Over the years, he has organized over 13 concerts with a cumulative total of over $26,000. His sister, Diane Padrutt, helped organize the concert at her church, and she also performed. According to Diane: “I’m so proud of Warren for his active involvement in supporting the work done by NSDA/Dysphonia International through the years. I am grateful that my church has been so supportive of hosting the benefit concerts which are well received. Executive Director, Kim Kuman, and Dr. Michael Hammer, Associate Professor of Communication Sciences & Disorders from UW-Whitewater, spoke about our organization and spasmodic dysphonia. An article in the local Sun Prairie newspaper highlighted the event.

Greater Los Angeles Leader, Toni Gold, stated: “I am so proud to be a part of this organization that makes me feel I can do anything, even with spasmodic dysphonia.” Area Contact Leader from NJ, Risa Clay, shared her spasmodic dysphonia experience with the school where she served as Principal: “I choose my words. There are times when I decide that they are not so important because the effort is too great. Casual conversations have become fewer. Nothing is more frustrating than loud restaurants or loud social gatherings. Even on good-voice days, these situations make it impossible to be heard. I began to accept that I could not control my voice, but I could build upon my strengths in other areas. For me, disclosing that I had SD was the best thing I ever did. I refer to my spasmodic dysphonia without shame and nervousness. People respected my honesty and candor.”

Momentum is building as people sign up and register to join us in raising awareness and funds for research of SD and related voice conditions. Find a group near you or create one of your own with friends, family, co-workers, healthcare professionals and others who support you. Feel empowered by sharing your story no matter where you live. Let the world know about spasmodic dysphonia and our organization which cares about you and your voice. Register today, click here. Be sure to send photos and videos to walk@dysphonia.org. Every step gets us closer to a cure! #walkfortalk

Mary Bifaro | John Comer | Carol Doles | Pat Hill

Dennis Kaszeta | Dot Sowerby | David Barton