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QUARTERLY REPORT OF THE BOARD'S

SUPPORT NETWORK COMMITTEE

VOLUME 70 | JUL-SEP 2023

OPENING THOUGHTS

This quote from the Valley of the Sun group reflects the spirit of our meetings whether they are virtual, in-person or hybrid: “We are truly looking forward to seeing all of you in person and continuing our mission of getting to know and support one another better. Your presence is valued.” Silicon Valley Co-Leader, Colleen Chon, shared her thoughts in taking on this new role: “Having SD can be challenging in the early days when you don’t know what this is. Being part of this community has been a great way for me to stay informed and meet other folks with this condition. Now, I’d like to give back and take a more active role in helping people with SD and other voice challenges.

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
SUBMIT

VIRTUAL MEETINGS

  • New Jersey Dysphonia Support Group
  • North Carolina Dysphonia Support Groups
  • Tampa Bay Dysphonia Support Group
  • Dystonia Support & Advocacy Group of San Diego
  • Valley of the Sun Dysphonia Support Group
  • Greater Columbus Dysphonia Support Group
  • Central OR Dystonia & Dysphonia Support Group


IN-PERSON MEETINGS

  • Charlotte Dysphonia Support Group
  • Oakland Dysphonia Support Group
  • Atlanta Dysphonia Support Group
  • Valley of the Sun Dysphonia Support Group
  • South Carolina Dysphonia Support Group
  • Sacramento Valley Dysphonia Support Group
  • Southeastern Wisconsin Dysphonia Support Group
  • Austin Dysphonia Support Group
  • London Ontario Dysphonia Support Group
  • Silicon Valley Dysphonia Support Group


HYBRID MEETINGS

  • Greater Detroit Dysphonia Support Group
  • Utah Dysphonia Support Group

CHANGES IN LEADERSHIP

Risa Clay has moved from Area Contact Leader to Support Group Leader of the New Jersey Dysphonia Support Group.

ADDITIONAL WORK BY OUR LEADERS

Past President from NC, Dot Sowerby, continues to compete as a running champion. She recently set American and World Records in the 10k, 400 meters, and 1500 meters. This article from Yahoo Sports included Dot's dysphonia journey as well. Also, Dot ran the half marathon with three family members. She set a world record for her age group by over an hour. During the race, fellow runners noticed the sign on her back indicating that she is 90 years old; many of them were clapping and cheering her on.

Area Contact Leader from KY/Greater Cincinnati, Don Johnson, raised funds and awareness on Twitch.tv. Also, he has hosted a Twitter/X Space to educate people on SD and related voice disorders. In addition, he is recording daily videos about the different stages of his voice with Botox treatments. He has shared his videos on Facebook, Instagram and Twitter/X. Don has also started support groups online on Facebook and Twitter/X.

Board Member from KS, Dorothy Tannahill-Moran, is a Certified Vibrational Sound Therapist. She visited the NC Support Groups virtually and the Detroit Support Group in a hybrid meeting to give an overview of sound therapy as a means of alternative healing. She conducted a brief sound bath and meditation. 

TOPICS & PRESENTATION IDEAS FOR SUPPORT GROUPS

Thanks to Atlanta Support Group Leader, Laura Rahuba, for sharing this meeting topic on gratitude. The Joint NC Virtual Support Groups effectively used the topic of exceptional listening for one of their monthly meetings. This article was used as a reference point.


At another Joint NC Virtual Support Group meeting this quarter, the topic of journaling to cope with a voice disorder was discussed. HERE is the link to the article written by Area Contact Leader from WA, Sue Abrams, which she graciously shared and discussed.  

TIPS FOR/FROM OUR LEADERS

Two of our leaders had more casual, low-key meetings and were pleased with the results. Area Contact Leader from OH, Nancy Peltier, reflected: “Four of us met in a café with no agenda and it went well." Support Group Leader, Kara Henderlight, commented: “I held a drop-in and it was a more informal casual event. I think that everyone enjoyed it.”

EDUCATIONAL WEBINARS

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


The August webinar featured Dr. Scott Norris, a neurologist, clinician, researcher and educator. He discussed exploring treatment-related brain circuits in spasmodic dysphonia. To watch the recording of the webinar and live Q&A, click here.

CHAMPION CORNER: RISA CLAY

Risa is a retired high school principal who currently serves as a local councilwoman. According to her, “My professional life has always required me to speak in public, and I’ve learned how to comfortably share about my vocal disorder.” Risa served as Area Contact Leader from NJ prior to just becoming the Support Group Leader of the NJ group. She has been a Spotlight Volunteer at a Joint NC Virtual Meeting. Risa stated: “Having SD has taught me so much about the value of support and empathy as well as the need to raise awareness.”


In 2016, Risa was profiled in “Our Voice” where she shared her dysphonia journey. Read the full article here: insert link In it, she commented: “For me, disclosing that I had SD was the best thing I ever did. As a very public figure, it was freeing and has made my job as a High School Principal much easier. I refer to my spasmodic dysphonia without shame and nervousness.” In Walk for Talk 2023, Risa has procured eight sponsorships to date and is one of our top fundraisers. In talking about her donors and sponsors, she stated: “It has actually been a healing process for me as I have had the opportunity to talk about my SD journey with people who have been so responsive to our collective mission.” She is pictured with her granddaughter during last year's Walk for Talk.

AREA CONTACT LEADER CORNER

Area Contact Leader from Singapore, Emily Lim, posted this article on resilience when describing her dysphonia journey.

ACL SPOTLIGHT | WARREN BANDEL


Area Contact Leader from MN, Warren Bandel, was featured in the quarterly ACL meeting held in August. He discussed his voice journey which began when he was in 6th grade and how it took time for him to accept spasmodic dysphonia. He has gone to Mayo Clinic to visit people in the cafeteria on days that they had their treatment. Warren was inspired by the stories and the positive experiences of people he met during our 2011 Symposium. He has been a trumpet player for over 46 years. He continues to do benefit concerts for Dysphonia International. In his words, “Music speaks louder than words. it’s a great gift to give back to the organization.” In case you missed the quarterly ACL meeting you can watch the recording here or to watch Warren's section, click here. To read a summary of what Warren shared, click here.

SUPPORT GROUP LEADER CORNER

The new leader of the New Jersey support group, Risa Clay, moderated her first meeting virtually with eight in attendance. According to Executive Director, Kim Kuman, “I think it went really well, with lots of engagement and questions.” Atlanta Leader, Laura Rahuba, described a recent meeting: “We had our first in-person meeting since the pandemic. Although it was a small group, it was still good because connecting with others with the same rare disorder gave us the opportunity to compare/contrast our experiences. Knowing the struggles of people like ourselves, we don’t feel alone.” Sacramento Valley Leader, Jan Lant, reflected on her last meeting: “We had a total of nine in attendance, including two newcomers with SD. It is always such a meaningful time of sharing, helping, and supporting each other.”

SGL SPOTLIGHT: SUSAN BECK



Dysphonia International Vice President and Development Director and Knoxville Leader, Susan Beck, was featured in the quarterly SGL meeting held in September. She joined the Board in 2018. She was diagnosed with adductor SD in 2016. Susan has participated in Dystonia Advocacy Days. In addition, she has represented our organization at Fall Voice and ASHA Conferences. She participates in our annual Walk for Talk events each October with her yoga friends and in her neighborhood with her husband. In 2020, she conducted a virtual art sale to benefit Dysphonia International. Her late father, Paul J. Long, was an accomplished artist. Susan donated limited edition fine art prints and made them available for purchase. In her words, “I learned how important it is to have someone to talk to about SD. I wanted to start a support group so others who are faced with an SD diagnosis can have the same conversations and know that they are not alone on this journey.” In case you missed the quarterly SGL meeting you can watch the recording here or to watch Warren's section, click here. You can read a summary of what Susan shared here

MONTHLY MEETINGS FOR LEADERS

In the new year, 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 8 at 7 PM ET.

REGISTER FOR ACL HERE


SGL Quarterly Meeting on Thursday, December 14 at 7 PM ET.

REGISTER FOR SGL HERE


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

REGISTER FOR ACL/SGL HERE

EXPLORING OUR WEBSITE | DYSPHONIA.ORG

“Your Journey” is a section where you will find topics such as What’s Wrong With My Voice; How Your Voice Works; Living With A Voice Disorder; Your Toolbox; Educating the Public; and Profiles of Strength. This is a great section to share with those who are newly diagnosed or for caregivers.

PODCAST PARTICIPATION PROGRAM

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. If you are interested in volunteering for this important outreach/awareness/education podcast project, we welcome your questions, comments, and participation. Please contact Dorothy at dorothyfrmkansas@gmail.com or the DI staff for more information.

REPRESENTATION AT MEDICAL CONFERENCES

Birmingham, AL Support Group Leader, Judith Rodwell, Dr. Edie Hapner, and a team from UAB Voice Center represented Dysphonia International at a UAB Otolaryngology Conference. They wore our Walk for Talk swag and stood behind our banner.  Their table display was incredible! According to Judith, “What a remarkable group of professionals, all working hard to raise awareness. I am so grateful to have their encouragement and help as I try to adjust to my voice problem.”

FUNDRAISING

Area Contact Leader from MN, Warren Bandel, hosted the 5th Annual Benefit Concert with his Classic Brass Quintet. Executive Director, Kim Kuman and Area Contact Leader from WI, Ray Schumacher, attended. Warren’s sister, Diane Padrutt, also performed. Close to $1,500 was raised for Dysphonia International.

WALK FOR TALK: OCTOBER 12-15, 2023

When you participate in Walk for Talk, you are working to raise awareness and funds for the research of spasmodic dysphonia and related voice conditions. Every step gets us closer to a cure! All donations will be matched through October 31, 2023.

CLOSING

Wendy Garrison from MS has been involved as a Support Group Leader and Area Contact Leader. She performed at the opening reception of our Nashville annual symposium. In 2021, she co-wrote and recorded the song, “I Have A Voice” which was part of our Walk for Talk campaign. Wendy stated: “Dysphonia International has provided critical encouragement, resources and friendships since she was diagnosed with abductor SD in 2005.


“You may not always see the results of your kindness, but every bit of positive energy you contribute to the world makes it a better place for all of us.” (Lisa Currie)

Dysphonia International Support Network Committee
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.
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