SPECIAL ANNOUNEMENT | We had hoped to gather in-person this year for the 2022 Annual Meetings, but there seems to be still too many variables and uncertainty due to the pandemic. Therefore, the decision has been made to host the meetings virtually once again this year. We hope you will join us! The Leadership Workshop will be on Friday, April 29, 2022, and the virtual Symposium on Saturday, April 30, 2022. By hosting the meetings virtually, we hope even more members of our community can participate. More details and registration information will be released in the coming weeks.

NSDA Past President from NC, Dot Sowerby, gave this advice: “Find things other than speaking that help you shine – whether that’s running in a race or sharing with your grandchildren or packing up lunches for the homeless or smiling at the handsome gentleman at the next table in the coffee shop. Life is too short to miss out on the things that give you pleasure or the things that help other people.“ According to Mother Teresa, “Life is an opportunity, benefit from it. Life is beauty, admire it. Life is a challenge, meet it. Life is a duty, complete it.” 2021 was an exciting year for the NSDA! With your help, we were able to fund four new research grants totaling $ 200,000! We brought our global community together for our Walk for Talk! We stayed connected virtually in many meetings and sessions.

Please submit the event information for your meeting by using this link: https://dysphonia.org/submit-an-event/ People are welcome to join any of our virtual meetings regardless of location. If the date and time work for you, click on the event and you will find a link to register for that Zoom meeting. Once you register, you will receive a confirmation email with the link to participate. For a quick check of all upcoming Zoom meetings of our support groups, you can visit this link: https://dysphonia.org/take-action/meetings-and-events/ Make sure to check back to see if new meetings have been added.

To host an in-person meeting, Leader from TX, Rose Farmer, held it outside in her front yard. Leader from London Ontario, Jennifer Roy, reported that they have not met since last spring as “it has become a challenge to find a time that works for everyone with our Covid restrictions”. Eastern Region & Canada Representative from OH, Carol Doles, commented in a communication to our leaders in her region: “I am so glad that your group members have you in their corners, cheering them on, and supporting them on their journeys with voice disorders.”

Michigan Leader, Dennis Kaszeta, will serve as our new Area Contact Director. Pat Hill from CA will continue to serve as Area Contact Communications Coordinator. Paige Kruse has stepped down as Leader of the Seattle group. Until a replacement leader can be found, Emily Wilson, SLP, will step up in the interim. Parlene Skiby is the new Leader of the Utah group. We are pleased to welcome a new Area Contact Leader from NC, Kris Sloman. 

Los Angeles Leader, Toni Gold, had an inspiring article written about her and her voice disorder. In it, Toni said: “Living with a voice disorder is a daily challenge because verbal communication is the primary way I communicate with people. I must constantly remind myself and others that SD is not who I am, but rather a personal characteristic that makes me unique.” Toni continues to raise awareness about spasmodic dysphonia by sharing this article. One of her readers commented: “You have no idea how much I needed to see such an inspiring example like yourself. Thank you for reaching out and giving me hope.” Click here to read the article.

Dot Sowerby has won over 100 medals in her running competitions. On Thanksgiving morning, she competed in the ‘Turkey Race’ and won a prize for being the oldest female in the race! In addition, Dot has been attending virtual support group meetings to talk about her new book, ‘Speechless No More: A Life Transformed by a Voice Disorder’. You may purchase the book by clicking HERE.

Area Contact Leader from Canada, Becky LaCroix, had an article written about her fundraising for our 2021 Walk for Talk. The article includes a listing of the five things that Becky wants people to know about spasmodic dysphonia. Click here to read the article.

A timely meeting topic for early in the year would be Support Group Meeting Topic #6 entitled: ‘New Year’s Resolutions for the Faint of Voice’ from our ‘Support Group Meeting Topics Workbook’. Click here to download.

It comes with a handout where meeting attendees can fill out some resolutions that might help you cope with your voice disorder. Four areas affected by voice which are covered are: communication, social interaction, career, and personal identity.

Use a holiday theme to organize a meeting topic or an event for your support group communities. Four of our groups did this for end of year activities. The Tampa group visited ‘Enchant Christmas’ together and had lunch afterward. The Charlotte group had its annual holiday open house fundraiser which included lunch. The Upstate SC group had a tacky holiday sweater party. The Utah group met virtually with speaker, Dr. Julie Barkmeier-Kraemer, discussing tips and strategies for successful participation in conversations and activities during the holiday season.

The Charlotte, NC group led by Mary Bifaro held The 20th Annual Holiday Open House/NSDA Fundraiser at her home in mid-December. The warmth and the spirit of encouragement at this gathering was quite special. Twenty-seven people attended, including Past President, Dot Sowerby, and new Area Contact Leader, Kris Sloman. $4,045 was raised from this event. In its 20-year run to date, this event has raised $27,467. Beyond the funds raised for our worthy cause, the NSDA, there is no price tag that can measure the friendships forged because of our numerous community gatherings.

We exceeded all expectations in our highly successful five-day primary fundraising event from October 7-11, 2021. A total of $122,663 was raised which was matched – so $245,326 was the total. During the Walk, we received photos and videos and read stories of support groups and individuals coming together with their friends, families, healthcare professionals, and co-workers. People felt empowered to raise awareness and funds for SD research. Generations of people and their pets joined together, and many walked behind our banner. AZ Co-Leader, Esther Zack, reported on the effort made by her group in both AZ and Montana where Co-Leader, Vicki Orazem, also resides. “In Scottsdale, members carried the banner with two people taking turns; they met Dr. David Lott from Mayo Clinic, and, the next day, SLPs Sarah Charney and Sara Davis, sent a video from Camelback Mountain. Vicki Orazem and her family walked in Montana with layered clothing to help with the cold weather.”

The date for our 2022 Walk for Talk has already been set so please mark your calendars and plan on joining the momentum and sharing your voice. 2022 Walk for Talk: October 20-23, 2022.

NSDA Treasurer from IN, Bev Matthews, and members of her group did an Assessment Session in Dr. Rita Patel’s graduate class of Speech-Language Pathology students at Indiana University in Bloomington. Tampa Co-Leaders – Ron Langdon and Jim Anderson - and Member, Diane Lefebvre, spoke virtually to a graduate class of Speech-Language Pathology students by sharing their experience of living with spasmodic dysphonia and answering questions. According to Co-Leader, Ron Langdon, “the presentation was very well-received, and they have been invited to return next spring”. Area Contact Leader from WI, Kara Henderlight, visited a graduate level Speech-Language Pathology class at the clinic where she had previously gone to find answers about her voice problem. She added: “I have become involved in advocacy, outreach and education with the NSDA. I will forever be seeking opportunities to share my experience with spasmodic dysphonia.” NSDA Executive Director, Kim Kuman; Charlotte, NC Leader, Mary Bifaro; and Tampa Co-Leader, Ron Langdon; spoke virtually to an undergraduate class of 25 Speech-Language Pathology students at Cal State University.

NSDA President from GA, Charlie Reavis, and Past President from NC, Dot Sowerby, represented us at the Fall Voice Conference in October. Dot Sowerby also represented us at the hybrid ASHA (American Speech-Language-Hearing Association) event in November together with NSDA Development Director, Susan Beck from TN, and Leader from VA, Kristin Koch. The NSDA was excited to exhibit both in-person and virtually.

This is a new section of Voices of Support. Our intention is to highlight some of the stories we hear from our 200+ Area Contact Leaders in our support leadership network and the various activities they are engaged in. Our newly elected Director of Area Contact Leaders, Dennis Kaszeta from Michigan, stated: “Our Area Contact Leaders are supporting people in their local area and starting to build contacts which may become fertile ground to start a support group. Part of my role is to engage our ACLs.“ Area Contact Leader from VA, Jelaine Wood, keeps up with the dystonia and essential tremor groups in her area. She stated: “We are still being careful dealing with Covid here. We hope to continue meeting as long as it is safe.” Area Contact Leader from Singapore, Emily Lim, has won the Silver Medal in the Best Book Series of the Moonbeam Children’s Book Awards.

Area Contact Leader from PA, Judy Endo, has done a number of jobs, including dog training and competitions, working in an adult psychiatric rehab program, visiting assisted living facilities with therapy dogs, writing for a newspaper and using many computer programs. In her resume, she states: “I have had spasmodic dysphonia for most of my life. Although my voice quality is different, I can be understood, and it does not interfere with the duties that I have effectively performed throughout my professional career.”

We hope that our leaders will fully explore the information and resources which are available on our website. To that end, we have added this column to Voices of Support. In each issue, we will discuss a different part of our website. There is a toolbox section which covers the stages of acceptance of spasmodic dysphonia. It is important to note that the stages are not neat and orderly. Click here for the toolbox section. Karen Adler Feeley’s book, ‘Easier Done than Said: Living with a Broken Voice’ covers this topic and so does Meeting Topic #2 in our Workbook. You may print out a copy of the Six Stages of Acceptance Model by clicking HERE. The Support Group Meeting Topic #2 and Questions can be found HERE. If you are interested in obtaining a copy of Karen Feeley's book, ‘Easier Done than Said: Living with a Broken Voice’ you may click HERE to place your order.

According to American essayist, Ralph Waldo Emerson, “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” Former US Secretary of State, Daniel Webster, stated: “lf all my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest.” NSDA Executive Director, Kim Kuman, reflected: “By embracing technology, the gift we have received in virtual meetings and sessions is meeting people from all around the world. In turn, they are getting to know the NSDA and our volunteers. We have opportunities to expand and connect, which is limited only by our imagination.”

Mary Bifaro | John Comer | Carol Doles | Pat Hill | Dennis Kaszeta | Dot Sowerby

David Barton | James Anderson

April 16: World Voice Day | April 29: Virtual Leadership Workshop

April 30: Virtual Symposium | October 20-23: Walk for Talk