Board Member and Silicon Valley Support Group Leader, Marcia Sterling, stated: “Knowing each other and sharing experiences really helps to build commitment to the larger organization from the folks doing the work on the ground.”

Area Contact Leader from TX, Bob Dockendorf, commented: “I have recently retired and have a bit more time now to invest some volunteer hours. It seems to me that there is no better place to invest these hours than with Dysphonia International”.

The Silicon Valley group was pleased that they were joined by guests from other Northern CA groups in Oakland and Sacramento.

At one of the San Diego meetings, singing was discussed and how that can be helpful to those with voice disorders and cathartic in general. The challenges of definitive diagnosis of spasmodic dysphonia and vocal tremor and the research studies which are ongoing and in recruitment were discussed at the DC/Northern VA meeting.

The Sacramento Valley group was excited to be meeting in-person again for the first time since the pandemic. They planned to get acquainted with newcomers, get reacquainted with each other and catch up on how everyone has been doing.

According to Memphis, TN Leader, Amy Nabors, SLP: “We had a small turn-out for our first in-person meeting. Carol Buchman attended and was so transparent about her journey. My graduate students were especially thankful for her message. The students truly benefitted from hearing about her journey. She is such an inspiration!” 

The Valley of the Sun group also had an in-person meeting for the first time in three years. According to Co-Leader, Esther Zack: “So glad we got to meet these fabulous warriors and their spouses! Let’s grow this team!”

Tampa Co-Leader, Ron Langdon, helped to organize this in-person event. Here is his brief report: “The Tampa Voice Conference held on March 4th was a huge success with approximately 20 people in attendance. We had 3 guest speakers. Dr. Yael Bensoussan, Director of the USF Health Voice Center, shared how a multidisciplinary approach is used to treat patients with voice disorders. Darla Freeman SLPD, CCC-SLP spoke about ways of taking care of your voice. Kim Kuman, Executive Director of Dysphonia International, updated the group about research projects currently underway and how we can become involved. Thank you to our excellent speakers and to Dr. Alexandra Brandimore from USF for hosting our conference.”

We are pleased to welcome these new Area Contact Leaders: Michelle Donovan from MI; Meredith Sexton from WA; Bob Dockendorf from TX; Donna Rossitto from ME; Rob Gerlach from MI; Deborah Humphrey from OK; Elizabeth Hurley from DE; and Paula Stegen from NV.

The following Support Group Leaders have transitioned to being Area Contact Leaders: Kate Blaker, Kristin Koch, and Shannon Porter. We thank them for their continued dedication to our organization in this new role.

We thank Dorothy, Jeannine, and Cathleen for their past service. We are grateful that Cathleen will continue to serve as an Area Contact Leader from AL.

We also welcome Amy Nabors, SLP as the new Leader of the Memphis, TN group.

We thank Thomas Everitt and Stephen Kaplan for their past service as Leaders of the Sussex County, DE and Altoona, PA groups respectively. Fortunately, Stephen will continue to serve as an Area Contact Leader from PA.

Board Member from NC, Dot Sowerby, continues to compete in the Senior Games. At age 90, she amazes and inspires everyone with her participation in running, long jump, and shot put. In all, she has won over 100 medals over the years. According to Dot: “It is fun to be in these games, the people you meet, the enthusiasm and support I get from other participants and the healthy feeling of getting exercise.” In addition, Dot continues to give book presentations on her memoir, ‘Speechless No More: A Life Transformed By A Voice Disorder’. If you would like to purchase a copy of Dot's book, visit our online store. Watch the video celebrating Dot's 90th birthday.

We continue to develop relationships with healthcare professionals outside the US. The response has been engaging and supportive of Dysphonia International. President, Charlie Reavis, and Executive Director, Kim Kuman, spoke virtually at the Winter Days of Laryngology where Dr. Peak Woo was the keynote speaker. Dysphonia International was mentioned in the recent newsletter of the European Laryngological Society (ELS) regarding our interest in funding research along with travel grants to professional medical conferences. There has also been an increase of international doctors registering for our online Healthcare Referral Directory.

Support Network Director from NC, Mary Bifaro, created a brief PowerPoint: "Love: How It Shapes our Dysphonia Journey" which she used on a Joint NC Zoom Call. Please see this link to view details.

Post about your meetings on your social media page in addition to our website. Consider adding a ‘Shine A Spotlight On A Volunteer’ segment to your virtual and in-person meetings.

Our outstanding Educational Webinars which started in June 2022 are uploaded to our YouTube channel.

In February, a webinar with Dr. Stacey Halum and SLP Rebecca Risser took place. That recording, along with the two new Q&A follow-up videos, are now available to view.

The March webinar featured Dr. Joel Blumin who discussed what a day in the life of a laryngologist looks like and answered questions. View the live webinar recording here. Also available is the follow-up recording (Part II) which includes Dr. Blumin's responses to the questions that were not answered live during the webinar, watch here.

Austin Dysphonia Support Group Leader, Rose Farmer, spoke to a voice class at the University of Texas at Austin's UT Speech and Hearing Center taught by Dr. Rosemary Lester-Smith. To help the students understand what living with a voice disorder means, Rose decided to bring "historic recordings of my voice with spasmodic dysphonia, both with and without Botox treatments to share with the class."

Utah Support Group Leader, Parlene Skiby, presented to a Speech-Language Pathology class at Rocky Mountain University of Health Professions which is taught by Dr. Phil Sechtem. Parlene met with the class virtually and shared how she was diagnosed, the treatments that she receives and answered questions from the students.

Greater Los Angeles Support Group Leader, Toni Gold, spoke to a group of 25 SLP students in Professor Maria Eugenia Castro's graduate-level class. During the presentation, Toni shared details of her support group and encouraged the students to attend an upcoming meeting.

Eastern Regional Coordinator, Carol Doles and her husband, Roger Doles, represented us at the OSLHA Conference (Ohio Speech-Language-Hearing-Association). Carol expressed her thoughts this way: “It was a wonderful experience. We met speech pathologists who had never heard of Dysphonia International and who were excited to take home our excellent resources. Some have patients with spasmodic dysphonia and related voice disorders. They told us that they would share about our organization and our local support group and felt that their patients would benefit greatly. We also met speech pathologists who are already passing along information about Dysphonia International to the patients they treat. We were able to encourage them with new resources and sincere thanks for all they are doing for the voice community. Finally, we were able to talk with vendors and learn about assistive technology that might be useful for many with voice disorders. It was incredible to be both on the giving and the receiving end for information that will benefit many. We were so proud to be a part of the team that is helping patients with voice disorders thrive.”

Area Contact Leader from Singapore, Emily Lim, is an award-winning children’s book author who has written over 40 picture books. She is a three-time IPPY (Independent Publisher Book Award) Winner, a two-time Moonbook Award Winner, and a Singapore Woman Award Honoree. In addition, Emily is the recipient of the National Public Service Medal for her work in creating informational Covid-19 children’s e-books for her community. She also penned her memoir, ‘Finding My Voice’. There, she describes her journey with spasmodic dysphonia and how she found a new voice through writing. In addition, Emily has launched fundraising initiatives, and does speaking engagements and book events and readings at schools.

This is how Emily describes her dysphonia journey: “Voice was something I had to confront in every sense of the word in both my old and new chapters in life. Spasmodic Dysphonia brought on the realization that I could not control something as fundamental as speaking. My broken voice shattered all illusions of control I had over my life. Life happened and grand plans were derailed. And in my quest to recover my normal voice over the years, I stumbled onto a new voice. It was within me all along.”

Area Contact Leader from TX, Bob Dockendorf, remarked: “I have been treated for SD for 23 years now and have often found great resources on the Dysphonia International website (dysphonia.org). I have encouraged others to seek support from you. Our local audience is admittedly small in number, but it is present. I am happy to assist anyone interested.”

Area Contact Leader from WA, Meredith Sexton, stated: “I have always been a people person and I love to help others. I have met in person with a few people and online with more that had heard of my issues. I helped direct them to the Facebook group for vocal cord paralysis, the Dysphonia International website, and I have shared my coping mechanisms.”

Area Contact Leader from IL, Sue Brammerlo Dirker, commented: “I went 24 years without a diagnosis of adductor SD. I don’t want anyone to have to wait as long as I did and experience the humiliation from doctors telling me everything was wrong with me.”

According to Area Contact Leader from MI, Michelle Donovan: “I am an advocate for raising awareness and for providing information such as resources, social media sites and finding specialists and support groups for people “like us”. I have been an advocate since diagnosed over three years ago (with vocal cord paralysis) and I am active in our organization both as a resource and speaker.”

Area Contact Leader from ME, Donna Rossitto, reflected: “I feel I can learn as well as participate in being an advocate for “my voice” and others like me who face the same challenges. It is my way of deepening and increasing my curiosity and awareness. I want to bring awareness to family, friends, and co-workers on my disability that I have just lived with, not really knowing that there are so many of us.”

Area Contact Leader from OK, Deborah Humphrey, remarked: “I am a pastor and I know how hard it is to maintain a job, speak in front of others, and even on the phone. I want to help reach out to others in Oklahoma who may not live within a major city.”

Area Contact Leader from DE, Elizabeth Hurley, observed: “I have worked with people with various mental and physical disabilities for around 35 years. I had never heard of vocal paralysis or spasmodic dysphonia. I found a Facebook group for individuals with vocal paralysis. I enjoy sharing my experiences with members of the group. I was happy to find Dysphonia International and the resources and information. I used my personal Facebook page to share my journey with friends and family in the hope of educating them as well.”

Area Contact Leader from NV, Paula "PJ" Stegen, shared: “I have spent most of my career building technical trade associations and co-starting and co-leading non-profits. I’ve also done leadership co-training for numerous corporations. I loved connecting with volunteers and building organizations during my career. After three years with SD, I’ve found how important being in touch with others having the same experience is. I hope to help other Nevadans find that support.”

Area Contact Leader from Canada, Andrina Rose, was featured in the quarterly ACL Quarterly Call held in February. She spoke about her voice journey and how important finding support was. She credits her SLP who tailored a program around her needs. After being on disability, she started her own search for help. She found NSDA, now Dysphonia International, and received warmth and understanding in response. Her mental healing started with her participation in the 2021 Walk for Talk. By reading our website and listening to the stories of others with a voice disorder, she found that she was not alone. We invited Andrina to serve as an Area Contact Leader after her participation in our 2022 Walk for Talk. Recently, she has joined our Education & Awareness Committee. As an Area Contact Leader, Andrina plans to focus on bringing awareness to healthcare professionals in her area so that others will receive help beyond a diagnosis. You can watch Andrina's portion of the meeting here or read a summary of what Andrina shared here.

Support Group Leader from KS, Jennifer Martinez, reflected: “I would like to serve to focus on relationship-building, exhibit humility, and empower others. I have a passion in encouraging others by sharing my life story.” 

Support Group Leader from AL, Judith Rodwell, stated: “I don’t want other people to have to deal with voice problems without having supportive and understanding folks around them. I’ve spent a lifetime as a vocal soloist and voice teacher and as a piano teacher. I know the grieving that happens when your voice starts to fail you. I love people and I love fostering their best as well as ministering to them when they are troubled.”

Longtime Tampa Bay Co-Leader, Ron Langdon, was featured in the quarterly SGL Call held in March. He spoke compellingly about having to give up his job at a call center because of his voice. Finding a support group meant the world to him as he had previously felt alone in facing his voice struggles. What keeps him going is wanting to help support someone else with a voice disorder. He has done 11 Walk fundraisers with his group. In addition, they have presented to SLP classes and have hosted two Voice Conferences. The Tampa Bay group were the recipients of the 2012 Midge Kovacs Annual Awareness Award. You can read a summary of what Ron shared here. If you missed the most recent SGL meeting, there is a recording for you to watch and Ron’s portion is shown here.

Next ACL Quarterly Meeting | Thursday, May 10 at 7 PM Eastern | Register here.

Next SGL Quarterly Meeting | Thursday, June 8 at 7 PM Eastern | Register here.

Next Joint Quarterly Meeting | Thursday, July 13 at 7 PM Eastern | Register here.

Volunteering and advocating for those with voice issues is the highest form of acceptance. Among other things, you can raise awareness with our World Voice Day coverage and our annual Walk for Talk events. You can join our support network and share your skills in helping us to plan campaigns. You can volunteer to speak to SLP classes, advocate on Capitol Hill, and attend medical conventions. Please join us and Dysphonia International is here to support you.

We mourn the loss of Judith McKey. She was an Area Contact Leader in the New Orleans area, attended annual symposiums, and volunteered at medical conventions to educate healthcare professionals about the challenges of living with SD. Her family has graciously asked that memorial contributions can be made to Dysphonia International.

Both online and in-person, support groups give help and hope. They provide companionship, offer adaptive strategies, and lessen loneliness and isolation. They also give people the opportunity to give of themselves. When doing so, they help others and themselves. An Area Contact Leader can be a lifeline to others, provide information on doctors, share experiences with treatments along with tips, and build lifelong friendships. “No one can do everything, but everyone can do something.” (Max Lucado)

Mary Bifaro | John Comer | Carol Doles | Pat Hill

Dennis Kaszeta | Dot Sowerby | David Barton