QUARTERLY REPORT OF THE NSDA BOARD'S SUPPORT COMMITTEE | VOLUME 61 | APRIL - JUNE 2021 |
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May these three inspirational quotes motivate us all to set off a chain reaction to reach out with words and deeds of encouragement:
“At the end of the day, it's not about what you have or even what you've accomplished. It's about what you've done with those accomplishments. It’s about who you've lifted up, who you've made better. It about what you've given back.”
— Denzel Washington
“Service is the rent you pay for your room here on earth.”
— Muhammed Ali
“The best way to find yourself is to lose yourself in the service of others.”
— Mahatma Gandhi
Due to the ongoing threat of COVID-19, in-person meetings were replaced with virtual meetings. Several sessions were combined to be statewide with several areas within the given states participating. The NSDA is pleased to offer our leaders the opportunity to conduct virtual meetings on the Zoom platform. This is a great way to keep your support group members connected when in-person meetings are not an option. Contact NSDA Executive Director, Kim Kuman, at kkuman@dysphonia.org for information on how to arrange a meeting. When all the details are ready, please submit the event information using this link: https://dysphonia.org/submit-an-event/
Per Kim Kuman, “It’s the one place to chat where you can speak, no matter how your voice sounds.” 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 visit this link: https://dysphonia.org/take-action/meetings-and-events/
Make sure to check back to see if new meetings have been added.
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NSDA SUPPORT GROUP MEETINGS THIS QUARTER |
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Dystonia Support & Advocacy Group of San Diego County
New York City SD Support Group
TX Joint SD Support Groups
NC Joint SD Support Group
Portland SD Support Group
Greater Columbus (OH) SD Support Group
Central OR Dystonia/SD Support Group
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Greater Philadelphia SD Support Group
Upstate SC SD Support Group
Central IA SD Support Group
GA/AL/MS Joint SD Support Groups
Silicon Valley SD Support Group
Los Angeles SD Support Group
Valley of the Sun SD Support Group
Greater Pittsburgh SD Support Group
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Atlanta Co-Leader, Cindi McCullough, commented on what gives her hope on her SD journey: “The SD research and wonderful researchers, my SD support group, SD friends and non- SD friends, family, and faith all help. In addition, from the time of my original diagnosis, the NSDA has been phenomenal in helping me learn, understand, and feel supported. I still remember the blog and emails from fellow SDers when I wrote to ask what is this disorder and how do I manage it? I am so thankful and blessed.” San Diego Leader, Martha Murphy, was delighted to welcome a participant from the UK in one of her recent Zoom support calls.
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We are pleased to welcome Peter Nagelvoort as the new Co-Leader of the Portland group; he will serve alongside Co-Leader, Janet Gensert. Thanks to Board Member from Kansas, Dorothy Tannahill-Moran, who has been assisting with this group. A new group has formed in Pittsburgh, PA and its leaders are: Stephanie Hannan and Madi Mele. Sadly, Columbus, OH Co-Leader, Mare Hull, has stepped down and we thank her for her past service. Fortunately, Eastern Region & Canada Representative, Carol Doles, has agreed to resume leadership of the group
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ADDITIONAL WORK BY OUR LEADERS |
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ACP from NE, Scott Flanagan, wrote a book, “Charming Jelly Roll Quilts”, and he has started doing book signing events. Tampa Co-Leader, Ron Langdon, has taken on the role of being a virtual tour guide of sites in his area. He posts on Facebook and includes photos and background information. ACP Liaison from CA, Pat Hill, went to a new physician as her previous doctor had retired. He saw in her chart that she had surgery for SD and he told her that he had never heard of it; Pat was happy to explain about SD to him. ACP from OH, Mary Grimm, told someone in her online Scrabble group about her SD. Since the person had never heard about SD, Mary directed her to the voice samples on our website at dysphonia.org. Past President from NC, Dot Sowerby, participated in the Senior Games; for her age group (85-89), she won six gold medals – one in shot put and five in running! The Tampa group led by Ron Langdon and James Anderson had a picnic (pictured above). It was a beautiful day and the turnout was fantastic – over 20 in attendance, including some new members. |
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TOPICS & PRESENTATION IDEAS FOR SUPPORT GROUP |
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A discussion could be framed on the usage of voice-recognition technology. This can leave people behind when they have trouble using their voices. Tech firms are working on improving their voice assistants to understand atypical speech. Alexa has a commercial with the message, ‘A Voice Is All You Need’. This message troubles some people with spasmodic dysphonia and related voice conditions. Click here for a link to the article. |
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TIPS FOR/FROM OUR LEADERS |
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Silicon Valley Leader, Marcia Sterling, offers to talk to/meet one-on-one with members who may not wish to come to meetings. Birmingham, AL Co–Leader, Cathleen McCulloch, puts a voice disorder awareness card inside her lanyard name tag when attending work meetings; they are available from the NSDA store. |
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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: ONE WORLD/MANY VOICES. The NSDA created a special World Voice Day webpage. On it, you will see six videos of people from around the world who are part of our NSDA community (pictured above in order from the left). Thanks to: ACP from Singapore, Emily Lim; Past President from NZ, David Barton; ACP from Canada, Becky LaCroix; Hawaii ACP, Beverly Ikalani; Yuki from Japan; and Bonnie Simpson from NC – for lending their voices. In addition, you will see the poem, “Speech Disorder” by Atlanta Co-Leader, Ilene Cooper. There is also a video of ACP from NE, Scott Flanagan, discussing the fundraiser that he did for the NSDA in honor of World Voice Day which raised over $3,500. The NSDA uploaded a world map which highlighted all the places around the globe that the NSDA has reached. There is a video of Past President, Dot Sowerby, reading her poem, “Speaking”. “Cookie”, the short film on SD created by Shane Hartline premiered in 2020 and a link to view it is on our webpage. AL Support Group Co-Leader, Cathleen McCulloch, wore a World Voice Day t-shirt and did a short video on Facebook. Program & Services Manager, Nancy Panos, wrote a blog article on World Voice Day. ACP from Singapore, Emily Lim, commented: “I was very happy to be able to contribute my voice to World Voice Day 2021. When I was going through my lowest with spasmodic dysphonia, I found answers and support through the NSDA’s online bulletin board.”
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AZ Co-Leader, Esther Zack, conducted a Facebook fundraiser for her birthday. She raised awareness about spasmodic dysphonia by describing it. She commented, “I’ve chosen this nonprofit because their mission means a lot to me.”
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OUR 2021 VIRTUAL MEETINGS |
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Special thanks to all of our leaders who participated in the 2021 NSDA Virtual Meetings. Board Members – Charlie Reavis from GA; Mary Bifaro from NC; Marcia Sterling from CA; Warren Bandel from MN; 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; and Bruce Menk from CO – attended the 2021 Virtual Board Meeting which was chaired by President, Charlie Reavis. Charlie Reavis gave the President’s Report; Bev Matthews delivered the Treasurer’s Report; Susan Beck gave the Communications Committee Report; and Mary Bifaro presented the Support Activities Report.
The 2021 Virtual Leadership Workshop (pictured above) was planned by: Board Member, Mary Bifaro; Eastern Region & Canada Representative, Carol Doles from OH; NSDA Executive Director, Kim Kuman; and Program & Services Manager, Nancy Panos. 64 leaders from across the globe participated with 27 states in the US and 2 International countries represented. Click here to read a summary of the meeting.
The 2021 Virtual NSDA Symposium took place on May 1, 2021.There was a combination of live panel presentations and pre-recorded presentations. This is the playlist of nine videos. We thank all of our speakers for their time and dedication to the NSDA community. 2021 NSDA Virtual Symposium - YouTube
NSDA President, Charlie Reavis, and NSDA Executive Director, Kim Kuman, served as Moderators of the 2021 NSDA Virtual Symposium. Serving as panelists on the discussion, ‘Three Ways to Keep Life in Balance’ were: Board Member, Dennis Kaszeta and Greensboro, NC Leader, Rebecca Cole-Turner. ACP from NJ, Risa Clay, served as a panelist on the Research Discussion. Board Member, Bruce Menk, served on the Treatment Paths panel. Board Members, Charlie Reavis and Susan Beck presented on ‘The Next Chapter of an Organization’. Board Members, Dot Sowerby and Marcia Sterling premiered Dot’s new book, “Speechless No More”. Marcia gave a touching introduction of Dot. Dot inspired us all with her wisdom in telling us to live well in spite of setbacks and to help others with perseverance and tenacity.
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Speechless No More: A Life Transformed by Voice Disorder
In this memoir by Dot Sowerby, she shares her struggles with a debilitating voice disorder that rendered her speech tremulous and broken. This new edition of Speechless covers the next twenty years of Dot’s life and twenty more years of progress in the treatment of spasmodic dysphonia, thanks in part to the passion and energy of all our friends and colleagues who work tirelessly to support the work of NSDA. PREORDER THE BOOK HERE
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Midge Kovacs Annual Awareness Award
The winner of this year’s award was the Atlanta group led by Co-Leaders, Ilene Cooper (pictured starting from the left) and Cindi McCullough, with recognition being given to past Leader, Debbie States, as well as Members- Laura Rahuba and Sue Payne. Support Services Director, Mary Bifaro, presented the Award. This group received the Mayoral Proclamation for World Voice Day. They attended the private screening of “ Cookie”. Laura Rahuba’s artwork won for our contest for “Celebrating Our Voice”. Sue Payne was one of the top fundraisers for our 2020 Walk for Talk. The Atlanta group was the top fundraising team in our 2020 Walk for Talk event. Click here for the full write-up of the contributions of this special group.
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Dot Sowerby Pioneer Award
The winner of this year’s award was Board Member and Silicon Valley Leader, Marcia Sterling. Board Member, Dot Sowerby, presented it to her. Marcia has led the Silicon Valley group for 15 years. She was NSDA Treasurer from 2007 to 2020. She has written a number of documents for the NSDA and is a past recipient of The Midge Kovacs Annual Awareness Award. She was of great help on the updating of Dot Sowerby’s new book, “ Speechless No More”. Click here for the full write-up of Marcia’s contributions.
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The NSDA mourns the passing of Mary Brady, an active member of the Philadelphia and Baltimore support groups. Mary had left instructions with her family that she wanted memorial donations to be directed to the NSDA at the time of her death. According to an article remembering her, “Mary taught us about living with gusto despite the handicap of spasmodic dysphonia, the vocal cord dysfunction that caused her high-pitched voice.” Mary was a grant researcher and writer as well as a marketing professional. In her essay, “The Rare and Colorful History of SD” which was published in “Celebrating Our Voice”, Mary stated: “A celebration of the members, volunteers and staff of NSDA who have provided a hopeful and positive forum for connecting us and advancing our cause for the last thirty years is well deserved.” New York City Leader, Adrienne Simons, knew Mary over the years and described her this way: “She was independent, free-spirited, funny, and didn’t let her voice stop her from expressing herself.”
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NSDA CHAMPION CORNER: WENDY GARRISON |
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Dr. Wendy Garrison is a Past Leader of the Greater Memphis support group; she currently serves as an Area Contact Person. Wendy has attended a number of Leadership Workshops over the years. In 2017, she shared her music at the Friday Welcome Party during our annual symposium. Wendy has been a musician since early childhood and learned to play slide guitar in Mississippi. She is well known in north Mississippi and her signature sound has been likened to a gospel prayer. She is currently specializing in creating original theme songs and soundtracks and she offers bluesy instrumental background music. ( www.msslideguitar.com) Wendy has been featured in a number of articles, and has made radio and television appearances. In addition, she brings slide guitar to schools, clubs, libraries, and camps.
Wendy is a retired biology professor whose writing has been featured in various university publications. She received the Sierra Club Award for outstanding achievement for her efforts in organizing a community recycling center. She was co-founder of Grand Prairie Friends of Illinois, a prairie preservation organization, where she served as President and Board Member.
Recently, the NSDA asked Wendy if she would compose an SD Song for us. Within a matter of days, she collaborated with Grace Askew, an award-winning songwriter and performer. Grace had been a songwriting coach for Wendy. Together, they wrote a song called, “I Have A Voice”, which Grace performed and posted on Facebook. According to Wendy, “It meant a lot to me that Grace took an interest in the voice disorder, the organization, wanted to be of service, and, in turn, shared the information on her social media.”
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The 2021 Walk for Talk Event will take place from Thursday, October 7, 2021 through Monday, October 11, 2021! We hope that you will join us in raising awareness and funds for the NSDA.
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The NSDA will launch its new virtual LEAD (Leadership, Education, Awareness, and Development) Program for all NSDA Support Network Leaders on July 22, 2021. For further details, click here. |
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Area Contact Person from NJ, Risa Clay, commented: “My family and friends are great, but the support of others with SD has truly gotten me through some tough times. I am happy and grateful to have each of you.” According to Area Contact Person from AZ, Wilma Myers, “I am a good advertiser for SD. I tell many people about it. Right now, I am trying to help a woman find a good doctor.” County music singer, Jimmy Dean, reflected: “I can’t change the direction of the wind, but I can adjust my sails to always reach my destination.” |
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NATIONAL SPASMODIC DYSPHONIA ASSOCIATION |
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OUR VISION
The Vision of the NSDA is to ensure the ongoing viability of the organization that will continue to lead the effort to eradicate spasmodic dysphonia and related voice conditions.
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OUR MISSION
The NSDA is 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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300 Park Boulevard | Suite 175 | Itasca, IL 60143 | 800-795-6732
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