QUARTERLY REPORT OF THE BOARD'S SUPPORT NETWORK COMMITTEE | VOLUME 65 | APRIL-JUNE 2022
OPENING THOUGHTS
NSDA/Dysphonia International President from Georgia, Charlie Reavis, stated in his remarks during our 2022 Virtual Symposium that we are evolving into having a new name, but our mission remains the same. We are the only organization dedicated to improving the lives of people with spasmodic dysphonia and related voice conditions through research, education, awareness, and support. We have expanded our mission to include related voice conditions. We have always been welcoming those living with other voice disorders. We understand how to live with and cope with a voice condition. We believe that we should expand our reach since we have the tools and capacity to serve a larger community through expanded outreach. This is an exciting time for people living with a voice condition. There is a large increase in the number of researchers working on voice. There is collaboration across voice centers in the US and International Regions. Researchers are going down more than one road to try to understand the cause of spasmodic dysphonia and look for better, more effective treatments. NSDA/Dysphonia International continues to draw more attention to our rare disorders as we fund additional research.
During her presentation on how the organization is going to expand support to be more inclusive, Support Network Director, Mary Bifaro, said, “Every voice matters! No matter your voice condition, your age, or your location, you belong to NSDA/Dysphonia International.”

As part of the 2022 Virtual Board Meeting and Virtual Leadership Workshop, participants were asked to write a Dysphonia International Introduction Statement. Click here for the responses ten from the Board Meeting and 26 from the Leadership Workshop.

We reached out to our support groups regarding the name change and expanded mission and the importance of having more uniformity on the naming convention used for our support groups. We are very pleased with the robust response. In addition, we are continuing with our push to engage our Area Contact Leaders under the leadership of Area Contact Director, Dennis Kaszeta.
SUPPORT GROUP MEETINGS THIS QUARTER
BE SURE TO SUBMIT YOUR EVENT TO HAVE IT BOTH ADDED TO OUR WEBSITE CALENDAR, AND AN EMAIL BLAST SENT OUT TO OUR COMMUNITY.

QUESTIONS OR NEED ASSISTANCE? CONTACT ANGIE PINSKI
VIRTUAL MEETINGS
  • Joint NC Dysphonia Support Groups
  • Valley of the Sun (AZ) Dysphonia Support Group
  • Pittsburgh Dysphonia Support Group
  • Greater Los Angeles Dysphonia Support Group
  • Chicago Area Dysphonia Support Group
  • Atlanta Dysphonia Support Group
  • Dystonia Support & Advocacy Group of San Diego County
  • Greater New York Dysphonia Support Group

IN-PERSON MEETINGS
  • Charlotte Dysphonia Support Group
  • Iowa Dysphonia Support Group
  • Twin Cities Dysphonia Support Group
  • Knoxville Area Dysphonia Support Group
  • Portland Area Dysphonia Support Group
  • South Central MN/Northern Iowa Dysphonia Support Group
  • South Carolina Dysphonia Support Group
  • Austin Dysphonia Support Group
  • Utah Area Dysphonia Support Group
  • Tampa Bay Dysphonia Support Group
SUPPORT GROUP MEETING REFLECTIONS
Tampa Bay Co-Leaders, Ron Langdon and Jim Anderson, organized a picnic (left) for their group. According to Ron: “Twelve of us enjoyed fabulous food, fun and fellowship.” Iowa Leader, Denny Richey, reflected: “We held our first get together meeting in over two years. We had our gathering in a local park, welcomed a new member and had a great discussion. It was fun to see everyone in person again.” Regional Coordinator from MN, John Comer, facilitated the Twin Cities meeting for Leader, Paul Thomas, who was sick. According to John, “This was their first face to face meeting in a long time. Dr. Divya Bhaskaran from the University of Minnesota, recruited five people for their research study using vibro-tactile stimulation for SD.” Regarding her recent virtual meeting, Los Angeles Leader, Toni Gold, stated: “As there was no guest speaker, the attendees had an opportunity to share their frustrations and successes of living with spasmodic dysphonia.” A virtual book club discussion was held to talk about “Speechless No More: A Life Transformed by a Voice Disorder. Author, Dot Sowerby and Editor, Marcia Sterling, served as hosts.
CHANGES IN LEADERSHIP
Diana Litt and Rebecca Cole-Turner have stepped down as Leaders of the Houston and Greensboro groups respectively. We thank them for their past service. Fortunately, they will continue to serve as Area Contact Leaders from TX and NC respectively. Southeastern PA Leader, Fred Hosier, is stepping down but will continue to serve as Area Contact Leader. He reflected on his past service: “I’ve enjoyed the years of working with the group, founded by Cathie Leister. It was also rewarding to have a regional NSDA symposium in Philadelphia and to have members of our local group attend other regional and national meetings. Another highlight has been working with Professor Elizabeth Grillo of West Chester University and the SLP students.”

Nicole Leitner joined our staff as our full-time Program and Operations Manager. She will play a hands-on role in the organization's administration to carry out and manage the operational and programmatic functions of the organization's activities. Nicole jumped right in starting the week of our annual meetings and had an opportunity to meet many of our leaders. Read more here.
ADDITIONAL WORK BY OUR LEADERS
Past President from NC, Dot Sowerby, was featured in a newsletter in her retirement community because of her recent participation in the National Senior Games. Dot won three medals in running and a ribbon in shot put. In addition, Dot participated in her local Senior Games where she won a total of five gold medals for running, long jump, and shot put.

Congratulations to Development Director from TN, Susan Beck, who graduated from the University of Tennessee non-profit management program, The Consortium for Social Effectiveness.
Area Contact Leader from MS, Wendy Garrison, shared an amazing story and video. Ken Pfalzgraf built a guitar for Wendy. In the video, he talks about his daughter, Tami, who is nonverbal due to CdLs. He connects his daughter’s communication struggle to Wendy’s and explains how both women communicate through music. To listen to the eight-minute part about Wendy, click here. You will hear Wendy speak about her slide guitar music and her journey with spasmodic dysphonia. She performs on her deck and discusses how she co-wrote the song, I Have A Voice, for our NSDA/Dysphonia International community.
TOPICS & PRESENTATION IDEAS FOR SUPPORT GROUP
Charlotte Group at their May Meeting
A meeting topic discussion which the NC Virtual Group has used is: “Helping Others with Vocal Dysphonia: Giving Back to the Caring Community that has Helped Us”. Participants were encouraged to take a close look at our website to find all the ways to show support and become involved. Some examples include: fundraising, raising awareness, attendance at virtual meetings, and participating in our annual Walk for Talk event. Click here to visit that section on the website.
TIPS FOR/FROM OUR LEADERS
Please submit the event information for your upcoming 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 click here. Make sure to check back to see if new meetings have been added. 
PRESENTATIONS TO SLP CLASSES
Tampa Bay Co-Leaders, Ron Langdon and Jim Anderson, and Member, Liz Monday, spoke to a voice disorders class at the University of South Florida about spasmodic dysphonia. According to Ron, “the presentation was very well received, and the students had a lot of questions.”
Area Contact Leader from CA, Rod Carter, presented in-person to a graduate class of 28 Speech-Language Pathology students at CSU Chico. According to him: “I had a wonderful experience and came away feeling that many people with speaking disorders will benefit from the caring and intellectually curious approach of these graduate students. None of the students had ever met a person with SD before.” Rod received a thank you card from the students and plans to return next year for the next class of students.
CHAMPION CORNER: REBECCA COLE-TURNER
Rev. Dr. Rebecca Cole-Turner is a retired minister and psychotherapist as well as author. She has been a Minister of Spiritual Formation, Spiritual Director, and Retreat and Pilgrimage Leader.
 
She led the Greensboro group before stepping down and now serves as an Area Contact Leader from NC. Since July 2020, she has co-hosted the NC Virtual Calls with Board Member, Mary Bifaro. They have just completed #24. Rebecca commented, “It is a wonderful testament to the fact that having support from those who also have spasmodic dysphonia and related voice conditions is so important in our lives that everyone wanted to have a monthly meeting.”
Rebecca participated in both our 2020 and 2021 Walk for Talk events. She has participated in the research trial for sodium oxybate (Xyrem) in MA. For World Voice Day 2022, she was recorded on video reading an excerpt from her poem, Dysphonic Symphony which is published in our Celebrating Our Voice booklet. It ends with these words: ‘You learn to tell others that you have a vocal dysphonia, and go on with your life, much kinder, wiser and more loving than before.”
AREA CONTACT LEADER CORNER
Area Contact Leader Communications Coordinator from CA, Pat Hill, shared this advice: “A friend with essential tremor contacted me yesterday as she is going through depression due to her inability to communicate normally. She asked how I coped. I told her that I think of the positive things in my life as there is a lot to be thankful for. I told her to make a list of things that are precious in her life and put it on her refrigerator to help remind her of those things. As we know, life can take many turns and be much worse. A voice disorder is the least of our worries.”
 
Area Contact Leader from CA, Francie Hornstein, commented: “I feel that my experience with SD gives me a good sense of what newly diagnosed people might be interested in. Since I am the third person in my immediate family to have SD, I know the impact it has had personally, professionally, family-wise, and more. I feel fortunate that I knew about SD before I was personally impacted by it. I had two role models for dealing with the condition. Mostly, I would just like to be support and a source of information for others.”
 
Area Contact Leader from VA, Jelaine Wood, reflected: “I think that it is important to let others know about the website and where the support groups are meeting in this area. It is good to be with others who are dealing with this disorder. I like to discuss SD with medical professionals who have never heard of spasmodic dysphonia.” Area Contact Leader from NE, Colleen Hernandez, stated: “I love meeting and helping others with SD. I remember how discovering and meeting others who also suffered with SD helped me so much.” Area Contact Leader from IL, Sharon Burgquist, remarked: “I would like to be able to help anyone new to this or to just give support. I’ve met a couple of people in person and feel that was helpful. I can help them navigate and learn more about their condition on the website and help them with finding a doctor if needed. I never had anyone help me until I went to a support meeting. That changed my life, and I finally had hope.”
 
Area Contact Leader from SC, Carol Wines, observed: “I was diagnosed with SD almost 30 years ago. I led a group in VA for many years. I have been treated for SD in multiple locations. I would like to connect with people looking for answers or support.” According to Area Contact Leader from FL, Sharon Boni, “I have lived with SD for more than 27 years. Because I have had it for so long, I don’t think that there are many situations that anyone can speak to me about that I have not also encountered. I feel that I am a valuable resource to anyone who is newly diagnosed or otherwise. It is important to share what you are going through or have gone through, and not just give blanket type advice.” Area Contact Leader from OH, Mary Grimm, attended a virtual local dystonia support group meeting hosted by DMRF (Dystonia Medical Research Foundation). She added, “The meeting gave me much insight into the various forms of dystonia. It seems like no two people are alike.” Area Contact Leader from VA, Lori Edwards, said: “I was diagnosed young and have spent many years with SD. I know the challenges and am familiar with doctors in my area that offer treatment. I am in a military town, so there is potential for having people here that don’t know where to go. I’d love to be that support person for them.”
EXPLORING OUR WEBSITE | DYSPHONIA.ORG
An important component of our website is the part which covers an overview of voice conditions. Dr. Robert Bastian, Chair of our Medical Advisory Board, has allowed us to reprint this information. He has also shared the link to his teaching website, Laryngopedia.
FUNDRAISING
Area Contact Leader from NE, Scott Flanagan (pictured left), created a fundraiser in conjunction with World Voice Day (April 16). He launched on Facebook Live with a video. He raffled one of the quilts from his collection to the pool of donors received. Over $2,100 was raised. In his words, “One of my main missions since my SD started in 2017 has been to raise awareness and funds for SD research and treatment.” Valley of the Sun Co-Leader, Esther Zack, held a birthday fundraiser on Facebook. According to Esther: “I’ve chosen NSDA/Dysphonia International because their mission means a lot to me.” Over $500 was raised. Board Member from KS and OR, Dorothy Tannahill-Moran, donated half of the proceeds from one of her sound therapy events to NSDA/Dysphonia International. Thank you all for your support!
WORLD VOICE DAY
World Voice Day is celebrated internationally each year on April 16. The goal is to increase awareness about the importance and impact of the voice. The theme this year was: ‘Lift Your Voice’. There were nine videos posted on the 2022 World Voice Day webpage of our NSDA/Dysphonia International website. These videos are of leaders from across the US and Canada who were expressing themselves through music they perform, through artwork they have created, through dancing, and through poetry and books they have written. The leaders in the videos are: Atlanta Co-Leader, Laura Rahuba; Oakland Leader, Iris Miller Stetson; Area Contact Leader from MS, Wendy Garrison; Area Contact Leader from NC, Rebecca Cole-Turner; Area Contact Leader from MN, Warren Bandel; Special Projects Leader from VA, Karen Feeley; Area Contact Leader from Canada, Becky Lacroix; AZ Co-Leader, Esther Zack; and Past President from NC, Dot Sowerby. There is an article about a Dysphonia International friendship (Becky Lacroix and Laura Rahuba) and a poetic metaphor which helps to explain vocal challenges (Area Contact Leader from NC, Jayne Reavis). Also, there is a story about a quilter (Area Contact Leader from NE, Scott Flanagan) who uses his art to raise awareness and funds for SD research. Finally, there are graphics and a section which gives links to various 2022 World Voice Day Programs from Medical Associations and Centers.
 
We were inspired to create a new program for NSDA/Dysphonia International which is called, Speaking Beyond Your Voice: Creative Outlets for Self-Expression. This will be an ongoing project. Self-expression is about communicating your individuality – your story, your thoughts, your feelings, and your emotions. It is a basic and critical need. It helps others understand us. It highlights our personality, conveys our needs, and connects us with others. Take the voice away, and a person’s primary form of expression is also removed, but the need to be heard remains. That is why art can provide a unique and alternate form of self-expression that can be even more important to those who have lost their voice due to a vocal disorder such as spasmodic dysphonia. Artistic expression communicates what words cannot. The creative process may also allow for greater understanding, self-reflection, and even healing. Click here to share your creative outlet.
OUR 2022 VIRTUAL MEETINGS
LEADERS IN ACTION AT THE 2022 VIRTUAL MEETINGS
Special thanks to all our leaders who participated. Board Members – Charlie Reavis from GA; Mary Bifaro from NC; Marcia Sterling from CA; Bev Matthews from IN; Susan Beck from TN; Charlie Womble from TN, Larry Kolasa from MI; Jane Gordon from MA; Dorothy Tannahill-Moran from KS; Dot Sowerby from NC; Dennis Kaszeta from MI – attended the 2022 Virtual Board Meeting which was chaired by President, Charlie Reavis and held on April 28, 2022. Charlie Reavis gave the President’s Report; Bev Matthews delivered the Treasurer’s Report; Susan Beck gave the Development Director’s Report; and Mary Bifaro presented the Support Network Report.
 
The 2022 Virtual Leadership Workshop was planned by: Board Member, Mary Bifaro; Eastern Region & Canada Coordinator Carol Doles from OH; Executive Director, Kim Kuman; and Project Advisor, Nancy Panos, and held on April 28, 2022. Fifty-six leaders from across the globe (including 10 Board Members, 14 Support Group Leaders, and 15 Area Contact Leaders) registered with 23 states in the US and 3 International countries represented. Serving as speakers were: Charlie Reavis, Mary Bifaro, Board Member from KS, Dorothy Tannahill-Moran, Board Member from MI, Dennis Kaszeta, Kim Kuman, and Nancy Panos. Click here to view the recording from 2022 Leadership Workshop.
 
President, Charlie Reavis, and Executive Director, Kim Kuman, served as Moderators of the 2022 NSDA/Dysphonia International Virtual Symposium. The theme of the program was, You Belong. The sessions were designed to show how you are an important part of the NSDA/Dysphonia International community no matter your age, location, or voice condition. Serving as panelists on the discussion, A Younger Perspective on Living With a Voice Disorder was MN Leader, Kara Henderlight. Serving as panelists on the discussion, You Belong to Dysphonia International were: Board Members, Charlie Reavis and Mary Bifaro, as well as Executive Director, Kim Kuman. For the playlist of four videos, click here. We thank all of our speakers for their time and dedication to our community. Click here to download a written summary
2022 NSDA/DYSPHONIA INTERNATIONAL AWARDS
Midge Kovacs Annual Awareness Award
The winner of this year’s award was the Valley of the Sun group led by Co-Leaders, Esther Zack and Vicki Orazem (pictured below in this order). Support Network Director, Mary Bifaro, presented the Award. This group has participated in three Walk fundraisers. Esther served on the Planning Committee of both the 2020 and 2021 Walk for Talk events. Vicki was a Virtual Leader for Montana before becoming Co-Leader for Arizona. Both leaders are active on Virtual Support Group Meetings and social media. Read the full write-up.
Dot Sowerby Pioneer Award
The winner of this year’s award was Board Member and Founding President from MI, Larry Kolasa. Board Member, Dot Sowerby, presented it to him (pictured left). Larry is the past Leader of the MI group. He has been serving on the Board since the founding of the NSDA in 1989. In 1998, Larry ran a marathon benefit entitled, ‘Running for Research’. The Million Dollar Roundtable Foundation with which he is associated has helped fund a number of NSDA projects over the years. Read the full write-up.
IN MEMORIAM
Rev. Dr. French O’Shields, Jr. passed away recently at the age of 92. Here is the link to his obituary. Dr. O’Shields was one of the personal story supplements in Dot Sowerby’s original book, “Speechless”. He gave this advice: “Discover alternate ways to fulfill your life and serve others even with your voice impairment. It’s your life. Fill it!” Read more here.
We send our condolences to Daniel Truong, MD, Founder and Honorary Director of the NSDA/Dysphonia International on the passing of his wife, Diane Truong. Diane was dedicated advocate committed not only to the work of the National Spasmodic Torticollis Association, but also that of the Dystonia Advocacy Network (DAN) and the Dystonia Coalition.
Area Contact Leader Patricia Quick from CA passed away after a long battle with a cancer. Her daughter Nancy shared, "Mom really appreciated the SD community and knowing others who could really understand what it was like to live with the same voice disorder." Read more here.
CLOSING
“I can complain because rose bushes have thorns or rejoice because thorn bushes have roses.” (Sir John Templeton) We want to bring hope to those we serve. Hope for better treatments. Hope for an eventual cure. Hope in knowing that everyone belongs in our community – no matter where you live, how old you are, and how your voice sounds. Until a cause and cure for SD have been found, our work continues. Each of you can make a difference in our organization. Every voice matters! Executive Director, Kim Kuman, reflected that the pandemic has transformed how we operate as an organization. The changes made have ensured that we are even more connected to our community and able to provide more services than ever before. This will serve us well with the expansion under Dysphonia International. There are new opportunities available to us. With a more inclusive name, we have a greater ability to raise general awareness of vocal challenges, support more people with voice conditions, and fund more research with the ultimate goal of finding a cure.
NSDA/Dysphonia International Support Committee
ARE YOU READY TO WALK? SAVE THE DATES!
THE 3RD ANNUAL WALK FOR TALK IS OCTOBER 20-23, 2022
NSDA/DYSPHONIA INTERNATIONAL
OUR VISION
Our vision is to ensure the ongoing viability of the organization that will continue to lead the effort to eradicate spasmodic dysphonia and related voice conditions.
OUR MISSION
We are dedicated to improving the lives of people affected by spasmodic dysphonia and related voice conditions through research, education, awareness and support.