Charlotte Dysphonia Support Group (left), Sacramento Valley Dysphonia Support Group (center), Knoxville Area Dysphonia Support Group (left).

VIRTUAL MEETINGS

• DC Metro & Northern VA Dysphonia Support Groups
• North Carolina Dysphonia Support Groups
• New Jersey Dysphonia Support Group
• Greater Los Angeles Dysphonia Support Group
• Silicon Valley Dysphonia Support Group
• Dystonia Support & Advocacy Group of San Diego
• Valley of the Sun Dysphonia Support Group
• Atlanta Dysphonia Support Group
• Central Iowa Dysphonia Support Group
• Seattle Dysphonia Support Group

IN-PERSON MEETINGS

• Charlotte Dysphonia Support Group
• Tampa Dysphonia Support Group
• Greater Detroit Dysphonia Support Group
• Greater Knoxville Dysphonia Support Group
• Austin Dysphonia Support Group
• Atlanta Dysphonia Support Group
• Sacramento Dysphonia Support Group
• London, Ontario Dysphonia Support Group

HYBRID MEETINGS

• South Carolina Dysphonia Support Group

The Central Iowa meeting included a presentation on relaxation techniques which was given by SLP, Audrey Tucker. According to Co-Leader, Denny Richey, “Audrey is eager to help our group and send us new members.” 

South Carolina Leader, Emily Young, SLP, is a yoga teacher and she led a meditation for participants. 

The Dallas-Fort Worth group led by Arleen Atkins and Judy Jahrig continues to enjoy meeting jointly with the Dystonia Association of Dallas (DAD) group.

We are pleased to announce that two new members have been appointed to the Dysphonia International Board: ACL Sue Payne from Florida and ACL Scott Flanagan from Nebraska.

Both Sue and Scott have been actively involved in awareness initiatives such as Walk for Talk and World Voice Day, and have contributed significantly to fundraising efforts for Dysphonia International. Read more about Sue and Scott!

Area Contact Leader from OH, Don Johnson, hosted a live chat on X (formerly Twitter). He was joined by Executive Director, Kim Kuman. The topic was the proposed changes to Medicare that will limit access to treatment with botulinum neurotoxin for spasmodic dysphonia. 

Board Member from NC, Dot Sowerby, has more than 150 medals from local, state and national competitions. She encourages people of all ages to keep moving and not to think that their best years are behind them. 

Past MS Leader, Wendy Garrison, was featured in a magazine for her gift of music. CLICK HERE to read the article. She co-wrote the song ‘I Have a Voice,' which was featured in our 2021 Walk for Talk campaign.  

The support group topic, Relationships and Voice Conditions can lead to an easy discussion whether meeting in-person or virtually. CLICK HERE to view or download a copy of the document. 

The Greater Los Angeles Group led by Toni Gold had an excellent meeting which featured Dr. Buz Jinnah, a neurologist and researcher from Emory University. In the beginning, Dr. Jinnah presents his slides on the topic, "Laryngeal Dystonia: Relationship to Other Neurological Disorders". This is followed by a Q and A during which laryngologist Dr. Michael Johns explains various treatment options. The meeting was recorded, watch it HERE.

Be sure to check the YouTube channel for interesting videos that we continue to add. This may well lead to a meeting topic for your group. 

Check out our full catalog of videos HERE and be sure you are subscribed so that you do not miss any new videos.

We are pleased to welcome a new ACL from NY, Philip Sanagursky. He commented: “I believe that I can help people currently or newly diagnosed with spasmodic dysphonia. I have had it for 24 years. I can relate to other people with SD from beginning of their diagnosis to what to expect/walk through on obtaining Botox injections and on quality-of-life issues.”

ACL from SC, Carol Wines, served as a guest speaker at a virtual New Jersey Support Group meeting. 

ACL from OH, Nancy Peltier, commented: “Through support group meetings, emails from Area Contact Leaders, symposiums, and all the other ways we interact with those with voice issues, we show that our voices do not prevent us from being productive members of society who find contentment in our lives.”

Area Contact Leader from WA, Sue Abrams, and her husband, Ken Abrams, previously created three videos to raise awareness about voice disorders. They added a Part 4, in which Sue and Ken's children comment on their personal experiences growing up with a parent that has a voice disorder. Watch it HERE.

ACL SPOTLIGHT | BONNIE SIMPSON

Bonnie is an Area Contact Leader from Upper NC. She co-moderates the monthly NC Virtual Support Group meetings with Support Network Director from NC, Mary Bifaro. She has participated in World Voice Day and Walk for Talk events. She has served as a guest speaker at virtual meetings. 

Bonnie has fully embraced her vocal image. She wrote the essay "Point of Voice Return," which was published in our collection, Celebrating Our Voice. In it, she stated: "I gained the courage to explain upfront, when speaking publicly, that I have a voice condition called spasmodic dysphonia. It is not life-threatening, but it is life-changing." She described her willingness to serve our community in this way: "This is the least I can do, considering how they have been such a lifeline – a lighthouse, if you will, for me."

Watch the full ACL Meeting from 8/10/24 HERE and Bonnie's section HERE. To read a summary of what Bonnie shared, click HERE.

The Tampa Support Group, co-led by Ron Langdon and Jim Anderson, had their annual summer picnic which was enjoyed by everyone.

Atlanta Leader, Laura Rahuba, described a recent meeting: “We had a small yet productive in-person support group meeting. Members used this safe space to role-play difficult conversations with doctors, friends, etc. about feeling misunderstood or disrespected because of their voice. We also discussed the emotional setback of experiencing a vocal decline after a long period of “good” voice.”

Sacramento Leader, Jan Lant, reflected on a recent meeting: “It was very interesting, informative, engaging, interactive and supportive. As a group, we were able to provide support, information, and share experiences.”

SGL SPOTLIGHT: JUDY RODWELL

AL Support Group Leader, Judy Rodwell was featured in the quarterly SGL meeting held in September. She has been working closely with the two Co-Directors of the UAB Voice Center – Dr. Edie Hapner, PhD SLP and laryngologist, Dr. Blake Simpson – to re-invigorate their group. Last year, they participated in a Walk for Talk event at the local botanical gardens. She has hosted several virtual meetings. Judy and her group attended the UAB Otolaryngology Conference in the summer of 2023 where they had a great table setup. 

Before her singing voice disappeared, Judy had 50 years of singing solo and in choirs. She continues to teach vocal and piano music both at home and virtually. She commented: “Listening to your stories on Zoom meetings has helped me be so much more resilient.” Judy shared the amazing story of meeting Esther from Nairobi on her virtual call and then meeting her in-person in Kenya when she visited there the following week. She took five pounds of our awareness materials to Esther and the two “sweet sisters” remain in contact. 

Watch the full SGL Meeting of 9/5/24 HERE and Judy’s section HERE. To read a summary of what Judy shared, click HERE.

At the beginning of 2023, we began a series of monthly meetings for our Support Group Leaders and Area Contact Leaders which 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:

ACL Quarterly Meeting on Wednesday, November 13 at 7 PM ET.

REGISTER FOR ACL HERE

SGL Quarterly Meeting on Thursday, December 12 at 7 PM ET.

REGISTER FOR SGL HERE

Joint ACL/SGL Meeting on Thursday, January 9, 2025 at 7 PM ET.

REGISTER FOR ACL/SGL HERE

The July 2024 Joint ACL/SGL meeting featured three Board Committee Chairs: Education & Awareness, Dorothy Tannahill-Moran from OR; Development, Susan Beck from TN; and Support Network, Mary Bifaro from NC. Each Chair outlined the purpose of their committee, the members of their committee, the areas of focus and SMART (specific, measurable, attainable, realistic, timely) goals for FY 2024-2025. One attendee commented that “the presentations were informative and eye-opening regarding all that the organization is working on.” If you haven’t looked at this meeting yet, you can WATCH IT HERE.

Colleen Chon served as Co-Leader of the Silicon Valley group with Board Member from CA, Marcia Sterling. When Marcia stepped down last quarter, Colleen agreed to serve as Leader of the group. Colleen attended our 2024 Leadership Workshop and Symposium in Detroit and our 2025 Symposium in Tampa. She facilitates meetings for her group, and she attends our quarterly Support Group Leader meetings. 

She has organized a Walk for Talk 2024 event in Redwood City which is a new venue for them. According to her, “This is a great opportunity to meet and share experiences with others in the voice community. We may be joined by medical experts from the UCSF Voice and Swallowing Center where some of us receive voice therapy and Botox treatments. Also possibly joining us will be healthcare professionals from the Biomagnetic Imaging Lab where research is being conducted to better understand and treat dystonia.” Colleen has participated in research there. 

In March this year, she also attended a CA state SLP conference. There, she joined fellow leaders – Sacramento Leader, Jan Lant and Area Contact Leader from CA, Rod Carter in serving on a panel of people living with voice disorders.  

Area Contact Leader from MN, Warren Bandel, hosted the 6th Annual Benefit Concert with the Classic Brass Quintet and other talented musicians from the venue, Our Savior Lutheran Church. This included his sister, Diane Padrutt. Also in attendance was Executive Director, Kim Kuman. They raised over $1,500.

Communication tools for Augmentative and Alternative Communication (AAC) are vital for people with voice or speech impairments. AAC customized tools facilitate communication and allow individuals to more fully express themselves. You can learn more about amplification systems, type-to-talk and operator-assisted communication by clicking HERE.

ACL from OH, Eileen Meehan, was interviewed by laryngologist, Dr. Paul Bryson, Director of the Cleveland Clinic Voice Center, for their podcast. Eileen shared about her background and dysphonia journey and gave details about the important work of Dysphonia International. Dr Bryson remarked: “Dysphonia International is a great organization, just as a physician seeing their presence at meetings, talking with people at various meetings and the wonderful online resources. It is like a very natural home for those with voice disorders that is sort of welcoming and educational.” Eileen stated: “Dysphonia International and their services with my volunteer activity with the organization has been a part of my radical acceptance of a life-changing event.” Listen to Eileen's discussion with Dr. Bryson HERE.

ACL from FL, Sue Payne, participated in the Speech Path Pod podcast with SLP, Aidan Osborne. This podcast focuses on the field of speech pathology, including clinicians, research, and patients. She gave an authentic and inspiring talk about rising above the challenges of living with spasmodic dysphonia and cervical dystonia. She credits her family, friends, and faith for getting her through. She has found her place in service to our Dystonia International community where she uses her considerable leadership skills from her past career. Listen to Sue's episode of the Speech Path Pod HERE.

Metro DC & Northern VA Leader, Laura Purcell Verdun, SLP, made special arrangements for their group members to tune into a keynote address and chat with radio broadcaster and journalist, Diane Rehm. Her topic was: ‘My Journey Living with Spasmodic Dysphonia’. Also presenting were Laura and our Executive Director, Kim Kuman. This was part of a professional development session for speech language pathologists.

Austin Support Group Leader, Rose Farmer, spoke to an SLP Class of Professor Jennifer Johnson at Texas State University. According to Rose, “These speech therapy students learned a lot about the challenges of living with spasmodic dysphonia and other voice disorders. The more these students know, the better off we all are. Since many of us went years before being properly diagnosed, speech therapy can help with diagnosis and provide therapy to improve our speech.”

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.

The fifth annual Walk for Talk will take place from October 17– 20, 2024. All donations received through 10/31/24 will be matched. We have many events listed on our website from across the US and internationally. Quite a few sponsorships have been received. Two media articles have been published: one for Risa Clay and Team New Jersey Group, click here to read, and another for Toni Gold and the Greater LA Group, click here to read. Once again, we are seeing strong involvement with the healthcare professionals who treat voice disorders. 

Our first Walk of 2024 was hosted by Dennis Kaszeta and the Greater Detroit support group at the end of September. The event was attended by nearly 60 people who enjoyed listening to a live band made up of medical professionals from Lakeshore ENT, face painting, food, and joining forces to raise awareness and funds.

We Walk for Talk each October to raise awareness and funds for voice research. Every step gets us closer to a cure!

Phyllis Lachowyn was an active member of Dysphonia International in the Cleveland area. Many years ago, she led a support group and helped with the Eastern Regional Symposium. It was very important to Phyl to donate her brain for research. Our organization worked closely with the family and our contacts at Harvard Brain Bank to ensure that this was accomplished. We appreciate Phyl’s volunteer leadership and her selfless gift to advance research. READ MORE

Board Member from OR, Dorothy Tannahill-Moran, is a certified sound therapist. One of her recent posts described integration. These inspiring words can readily apply to our work as support network leaders. “Integration is about truly connecting and becoming part of a group, whether a community, family, or organization. Integration challenges us to find our place within the whole, navigating the dynamics and creating harmony with others. Feeling at home in a group is a journey of connection, comfort, and finding flow within the bigger picture.”