We were pleased to host our in-person symposium where we were welcomed warmly by the Tampa support group. President, Charlie Reavis, served as Moderator. Serving as Ambassadors were: Warren Bandel, MN Area Contact Leader; Denny Richey, IA Support Group Co-Leader; Jean McMahon, MN Support Group Co-Leader; Colleen Chon, Silicon Valley Support Group Leader; Ron Langdon, FL Support Group Co-Leader; Barb Meteyer, MI Area Contact Leader, Toni Gold, LA Support Group Leader, Philip Sanagursky, NY Member, and Debbie States, SC Member.  Congrats to our organization on reaching its 35th anniversary! The symbol for this milestone is coral. Our theme acronym was CORAL - Community Outreach Research Awareness Leadership. There were about 75 people in attendance. The speakers were understandable, empathetic, and helpful. The weekend proceedings were informative, educational, and fun. The spirit of family, friendship, and camaraderie was palpable and wonderful to be immersed in.  

Support Network Director from NC, Mary Bifaro, prepared a summary with her informal notes. We can read her notes HERE.

MIDGE KOVACS AWARENESS AWARD

The recipient of this year’s award was the New Jersey Support Group led by Risa Clay. Support Network Director, Mary Bifaro, presented the Award virtually. Risa is a retired high school principal and currently serves as President of her local council. She participated in Walk for Talk 2022 and 2023. Last year, she was the top fundraiser with over $12,000 raised, and she received the highest number of sponsorships. She has agreed to serve on the Planning Committee for Walk for Talk 2024. Risa shared a video message for World Voice Day 2024. She received a Proclamation from her town and attended a ceremony to receive it. The full write-up of this Award can be found HERE.

DOT SOWERBY PIONEER AWARD

The recipient of this year’s award was Past President Bruce Menk. Past President Dot Sowerby presented the Award virtually. Bruce served as pro bono legal counsel for our organization from 2000-2020. He was in the practice of law for 47 years. After his retirement, he returned to serve on the Board. He has lived with adductor spasmodic dysphonia since 1989, and Botox injections are successful for him. One of his daughters is a speech pathologist. He shared about himself and his voice journey in this interview, CLICK HERE to watch. He has a positive message in his words, “Stay positive! You’re not the only one! You can go forward!” The full write-up of this Award can be found HERE.

WALK FOR TALK AWARDS

Executive Director, Kim Kuman, was presented with the Walk for Talk Trailblazer Award “in recognition of exceptional leadership and dedication, and for expert coordination, tireless commitment, and inspiring others to take the first step”. Her “vision, passion and guidance have empowered voices and impacted lives.”

For their work on the Planning Committee of Walk for Talk, 9 leaders received the First Step Award: Mary Bifaro, James Anderson, Dennis Kaszeta, Sue Payne, Ron Langdon, Vicki Orazem, Laura Rahuba, Denny Richey, and Esther Zack. It reads: “in recognition of outstanding leadership in developing Walk for Talk, which has empowered our community to step forward together to raise awareness and find a cure for spasmodic dysphonia and related voice conditions.”

VIRTUAL MEETINGS

• New Jersey Dysphonia Support Group
• Greater Los Angeles Dysphonia Support Group
• Alabama Dysphonia Support Group
• Dystonia Support & Advocacy Group of San Diego
• Valley of the Sun Dysphonia Support Group
• North Carolina Dysphonia Support Groups
• DC Metro & Northern VA Dysphonia Support Groups
• Central OR Dystonia & Dysphonia Support Group
• Greater New York Dysphonia Support Group

IN-PERSON MEETINGS

• Charlotte Dysphonia Support Group
• Oakland Dysphonia Support Group
• Twin Cities Dysphonia Support Group
• Knoxville Area Dysphonia Support Group
• Central Iowa Dysphonia Support Group
• Dallas-Fort Worth Dysphonia Support Group

HYBRID MEETINGS

• South Carolina Dysphonia Support Group

Board Member from CA, Marcia Sterling, has stepped down as Co-Leader of the Silicon Valley group and we thank her for her service. Fortunately, Co-Leader, Colleen Chon, will step up as Leader of this group.

Past Columbus OH Co-Leader, Mare Hull, raised awareness and funds for Gracehaven which helps minors get out of sex trafficking. She and other volunteers rappelled down Chase Tower and they were interviewed by a news reporter. Click here to watch the video.

This document offers eight tips for managing social situations with a voice disorder. They lend to an easy conversation topic for a virtual, in-person or hybrid meeting.  

Visit our Calendar of Events section on our website to read the program details of meetings we are conducting. You may well find a topic or speaker that you might want to use for one of your upcoming meetings.

Oakland Leader, Iris Miller Stetson, incorporates a relaxation exercise into her meetings. One she recently did received a very enthusiastic response, and she has agreed to share it:  

Relaxation/Mindfulness Exercise: BLOWING AWAY FEARS & ANXIETIES

Relax your body and close your eyes as you gently inhale through your nose and exhale through your mouth a few times. Then, slowly inhale on a count of 4 as you picture or think of something that causes you fear or anxiety. Then, exhale through your mouth on a count of 4, imagining yourself extinguishing the fear, blowing it out like the flame of a candle. Repeat 3 times.

We have added two international Area Contact Leaders – Yvonne Coyne from Ireland and Turkan Kocaman from Turkey. According to Yvonne, “There is a serious lack of support for SD here in Ireland. I would like to think if I could connect with even one individual, they wouldn’t feel ‘alone’ as if they are the only person with this condition. It acts as a huge relief to connect with others going through the same fears and anxieties. I would love to be that contact person to reach out and help others in any way I can.”   

Area Contact Leader from NC, Bonnie Simpson, served as a guest speaker at a virtual New Jersey Support Group meeting.

Two Area Contact Leaders met each other in-person for the first time and enjoyed brunch together - Area Contact Leader from NC, Bonnie Simpson, and Area Contact Leader from SC, Carol Wines. Bonnie stated: “I am doing my best to represent the Joint North Carolina Virtual Group by participating in other virtual meetings as much as possible. Carol commented: “What a blessing it is to have time to share stories and support each other on our journey. My pledge for 2024 was to become active again in Dysphonia International and to put my words into action.”

Area Contact Leader from the UK, Margaret Stoddart, did a radio interview on Radio Northwich to talk about voice disorders, including muscle tension dysphonia, which she has. Her goal is to raise awareness. In addition to naming our organization, Dysphonia International, Margaret and the radio host, Kim Smith who have been friends for 20 years, discussed the physical and mental impact of living with a chronic voice disorder and the need to avoid social isolation. Listen to the interview HERE.

Area Contact Leader from WA, Sue Abrams, and her husband, Ken Abrams, have created three videos to raise awareness about voice disorders. In Part 1, Sue shares the challenges on her voice journey. In Part 2, Sue discusses coping strategies. In Part 3, Ken gives insight into supporting a loved one with a voice disorder.

ACL SPOTLIGHT | ROD CARTER

Area Contact Leader from CA, Rod Carter was previously highlighted as the Spotlight Volunteer. He returned to amplify some of his thoughts regarding participation in the Guest Speaker Program to SLP classes. He considers this outreach to be one activity for Area Contact Leaders to consider doing to become further involved in our organization. He found this experience to be appreciated by the students as he was sharing useful information. He thinks that the classes are eager and welcoming. He stated that many times SLP students have never met anyone else with SD. His relationship with California State University Chico continues to grow.

Watch the full ACL meeting from May 15, 2024, HERE.

The Central Iowa group combined a support group meeting with an outdoor picnic. They described it this way: “This is a chance to enjoy nature, good food, and meaningful connections. Let’s create memories and support each other in the beauty of the outdoors.”   

The Dallas-Fort Worth Area group's meeting was also a summer social. 

Knoxville leader, Susan Beck commented on their April meeting: “We met in-person and enjoyed lunch and fellowship together at Olive Garden. Several new people joined us in a new location for our group.” 

Atlanta Leader, Laura Rahuba, has planned both a virtual and in-person meeting for next month. 

New York Leader, Adrienne Simons, successfully used the topic, ‘Accommodations for Communicating with Others’ in a recent meeting. The topic can be found in the Leadership Library. Adrienne commented, “Everyone participated; the material was relevant, positive, and offered a new two-sided way of looking at communicating.”

SGL SPOTLIGHT: LAURA RAHUBA

Atlanta Support Group Leader, Laura Rahuba, was featured in the Quarterly SGL meeting held in June. Before relocating to GA, Laura was active in the Nashville group. She has attended Dysphonia Advocacy Day and has served as a Social Media Ambassador for our organization. Laura has attended several of our Leadership Workshops and Symposiums. She was a speaker at the Joint NC Virtual Meeting when she discussed her artwork and voice journey. She has participated in a research study at Emory Voice Center in GA. She believes in being your own advocate and the vital importance of community.



In 2020, Laura was profiled in the Champion Corner of Voices of Support. She was the winner of artwork in our book, Celebrating Our Voice with her piece, Lost My Voice, Found My Voice. She stated: “Voice is part of one’s identity. When I lost my natural speaking voice, I lost a part of myself. After the grief passed, I learned to love and accept my new voice, both literally and figuratively”. Laura’s artwork was featured in World Voice Day 2023 and 2024. Laura attends the Walk for Talk events in GA yearly. She was one of the recipients of the First Step Award for her work on the Planning Committee of Walk for Talk. 

Watch the full SGL Meeting from 6/13/24 HERE and Laura's section HERE. To read a summary of what Laura shared, click HERE.

At the start of 2023, we began a series of monthly meetings for our Support Group Leaders and Area Contact Leaders, and these are recorded. We hope that you will take advantage of this opportunity to interact with and learn from your fellow Leaders. 

Register for an upcoming meeting:

Joint ACL/SGL Quarterly Meeting on Thursday, July 11 at 7 PM ET.

REGISTER FOR ACL/SGL HERE

ACL Quarterly Meeting on Saturday, August 10 at 7 PM ET.

REGISTER FOR ACL HERE

SGL Quarterly Meeting on Thursday, September 5 at 7 PM ET.

REGISTER FOR SGL HERE

Judy Jahrig and Arleen Atkins are long-term co-leaders of the Dallas Fort Worth Area Dysphonia Support Group. They have attended multiple Leadership Workshops and Symposiums. Together, they joined us for our 2023 meetings in Detroit. Judy has participated in SD research with Southwestern Medical Center. They were the hosts for our 2018 Symposium in Dallas. Judy joined us at the Fall Voice Conference in Dallas in 2019. In 2022, the DFW group met jointly with the Dystonia Association of Dallas (DAD) in the home of Judy Jahrig. Members enjoyed food and fellowship and shared experiences related to treatment and research participation with the Simonyan Lab.  

Area Contact Leader from OH, Donald Johnson, did a charity livestream on Twitch which raised funds for our organization; he plans to do another one in June. Check out Don's twitch account and/or donate HERE.

Check out the section on future treatments. There, you can learn more about: Deep Brain Stimulation, Implantable Electric Stimulator, Sodium Oxybate (Xyrem), and Vibro-Tactile Stimulation. CLICK HERE to read more.

One of the initiatives that the Education & Awareness Committee is working on this year is being guests on podcasts. Board Member and Education & Awareness Committee Chair, Dorothy Tannahill-Moran, has outlined the program here.

We are looking for volunteers to work with Dorothy (dorothyfrmkansas@gmail.com) and Dysphonia International staff to help create this program and develop a process for implementation. If you are interested in this important outreach/awareness/education podcast project, we welcome your questions, comments, and participation.

Area Contact Leader from the UK, Margaret Stoddart, recorded a podcast for the Speech Path Pod which focuses on the field of speech pathology, including clinicians, research, and patients. In the last issue of Voices of Support, we mentioned that Area Contact Leader from OH, Eileen Meehan, and Area Contact Leader from Canada, Andrina Rose, also did podcasts there. CLICK HERE to listen to all three podcast episodes.

CLICK HERE to view the complete coverage of this year's World Voice Day on our website. Social media posts and haiku submissions were numerous. A member, Bill Slaney, raised donations for our organization by running in the Boston Marathon. Three podcast episodes were launched. Peter Haskell had an article published. Two ACLs shared their personal stories – Rod Carter and Margaret Stoddart. Vice President, Susan Beck, and Executive Director, Kim Kuman participated in a World Voice Day event. ACL, Scott Flanagan, gifted his quilt, ‘Please Repeat’ to his laryngologist, and shared his story on Facebook. Lakeshore Professional Voice Center in MI performed their annual concert. Two speech-language pathologists from AZ – Sara Davis and Sara Charney – presented at a dental foundation.

Area Contact Leader from FL, Nancy Livesay, presented with Emily Cole, SLP. Here are comments from Nancy: “Together, we co-presented to a group of 35 community-minded women in Ventura Country Club who meet monthly to learn about and discuss topics of general interest. There were oohs and aahs as they learned about the history of World Voice Day, the anatomy of the throat, how to care for their voice, the function of the SD voice, and the challenges we face. It was a wonderful opportunity to build awareness, educate and discuss the importance of voice.” 

Area Contact Leader from OH, Eileen Meehan, and Eastern Regional Coordinator from OH, Carol Doles, presented to an SLP Class at Ohio State University. According to Carol: “Eileen presents informatively, enthusiastically, thoughtfully, and expertly. The students loved listening to and talking to her.” Eileen remarked: “Presenting with Carol was a joy. It is always great to get to see our Dysphonia International friends in person. The students got the benefit of hearing Carol’s story, and witnessing her humor, determination and wisdom.”

Area Contact Leader from SC, Carol Wines, spoke to the graduate SLP Class of Dr. Kelly Richardson at Medical University of South Carolina. Carol shared her 30+ year journey with spasmodic dysphonia and answered the thoughtful questions of the students. She plans to “continue working with Dr. Richardson and her students to support their awareness of dysphonia and foster their community involvement with dysphonia patients.”

Three members of the Tampa group spoke to the SLP class of Professor Alexandra Brandimore of the University of South Florida – Co-Leaders, Ron Langdon and Jim Anderson; and Member, Tanja Turner Bell. According to Ron, “their presentation on spasmodic dysphonia was very well-received”. This outreach was picked up by the news and a brief article was published. Read the article HERE.

New Jersey Support Group Leader Risa Clay shared her voice journey with Professor Alison Scheer-Cohen's graduate glass at California State University, San Marcos. Risa commented "I truly enjoyed the opportunity and [the] students were an excellent audience." The professor stated that Risa's presentation had a meaningful impact on the students, saying "many of them discussed how they will use what they learned in future clinical practice."

California State University, Chico got another visit from Area Contact Leader Rod Carter. Rod returned to Dr. Megan Willi's class to share his story. Rod reflected "I was very touched again today by the graduate students’ eagerness to hear my story and the depth of thought expressed in their questions." The students conveyed their appreciation for Rod in a thank you card. On the card, one student wrote "thank you for sharing your story. We do not take it for granted."

Minot State University Professor Lisa Roteliuk's graduate class benefitted from hearing Twin Cities Support Group Leader Jean McMahon's presentation on her experience living with a voice condition. Jean commented "it was great to have a very engaged student audience. They asked great questions and were well-prepared for the presentation."

Eileen Meehan also spoke to the Voice Disorders graduate class at Cleveland State University. There were 33 students who heard Eileen speak about "my new treatments, all the exciting AAC and AI assisted apps from the symposium" and Walk for Talk. This is the second time Eileen has visited Cleveland State University to share her voice story and resources that will help those living with a voice condition.

We are always looking for new universities and programs that may be interested in having a Guest Speaker presentation. If you know of a professional that teaches speech-language pathology classes, please contact Nicole Leitner at nleitner@dysphonia.org for more information on this program.

Find more information and sign up to be a Guest Speaker HERE.