Co-Leader of the Valley of the Sun Group, Esther Zack, described their recent meeting: “The Zoom meeting was fabulous with 19 attendees from all over the Southwest. We invited six states to join us, and we had a great cross-section of the Southwest and Montana.” Central VA Leader, Kristin Koch, shared about the hybrid meeting she facilitated this quarter: “We had a great time! I would recommend a powerful speaker for the audio. Once we had the loudspeaker, the in-person group stopped chatting and followed along, creating more of a true ‘meeting’ atmosphere.” Development Director from TN, Susan Beck, described a recent in-person meeting: “We enjoyed getting to know a new member and we discussed a variety of topics, including our Walk for Talk and a research study at Harvard.”

Atlanta Co-Leader, Cindi McCollough, has stepped down; we thank her for her past service. Social Media Ambassador, Laura Rahuba, has agreed to serve as Co-Leader of the Atlanta group. We are pleased to welcome two new Area Contact Leaders from FL – Rosalee Walker from Fort Lauderdale and Sharon Boni from Boca Raton. According to Sharon, “The opportunity to help and connect with others in my area would be such an honor.” Bonnie Simpson is our new Area Contact Leader from NC. In addition, we are pleased to welcome Area Contact Leader from KY, Cecilia Wheeler. Kate Blaker has taken over as Leader of the Chicagoland group now that longtime Leader, Cathy Jacobs, has stepped down. Regrettably, Board Member from MN, Warren Bandel, has resigned and we are grateful for his past service. Fortunately, he will remain active in the NSDA support leadership network as an Area Contact Leader. We are pleased to welcome Shannon Porter back as Leader of the Denver Area group.

On a recent virtual call, Co-Leader of the Valley of the Sun group, Vicki Orazem, asked three questions which provoked discussion among Zoom meeting attendees. The questions came from the presentation given by Carol Doles, Eastern Region and Canada Representative from OH, during our Lead Program #1. They are for the newly diagnosed: 1. Identify challenges associated with living with a voice disorder. 2. List techniques and tools that help you with the challenges. 3. List positive aspects of living with a voice disorder. According to Vicki, the flow from each question was perfect, and we used Chatterfall technique, and I love it.”

Silicon Valley Leader, Marcia Sterling, encourages her members to attend virtual and in-person meetings by saying: “As is the case with any support group meeting, your presence at these meetings is so important to keep our community connected and to offer your experience and perspective to others who may be struggling with their voice disorder.” NSDA President from GA, Charlie Reavis, attends many of our Zoom support group meetings. He stressed the need for our leaders to encourage their members to visit our NSDA website often (www.dysphonia.org). In future issues of Voices of Support, we will have a section which will highlight different areas of our website.

In honor of her milestone 75^th birthday, Advocacy Leader from FL, Emma Mattes, created a Facebook fundraiser and asked for donations to the NSDA. During the campaign, she wrote and posted essays on her 40-year journey with spasmodic dysphonia. According to Emma, “I have bonded with many others who have the same condition I do, and we would meet regularly for seminars and group meetings.” She has spoken to SLP classes to raise awareness about spasmodic dysphonia. Five years ago, Emma was appointed as Chair of the Dystonia Advocacy Network based on her visits to Capitol Hill to urge legislators to keep dystonia eligible for research and funding. Emma decided to match the total amount donated for her birthday fundraiser which was $1,965.00. Emma concluded, “I always say that in many ways SD has enhanced my life and brought me many experiences that I never would have imagined.”

Area Contact Leader from MN, Warren Bandel, organized a parking lot concert benefit for the NSDA. Warren has been organizing annual benefit concerts in Rochester, MN; Sun Prairie, WI; and Mankato for the past six years. An article was published about the August 15 benefit which helped to raise awareness about spasmodic dysphonia. Warren’s sister, Diane Padrutt, played the piano, and Warren and his Classic Brass Quintet performed (pictured right). NSDA Executive Director, Kim Kuman, attended and spoke briefly. In all, a total of over $1,600 was raised.

In August, Dr. Herbert Dedo passed away at the age of 88. He was an Ear, Nose and Throat surgeon for 50 years and practiced in San Francisco. During his career, he developed new surgical techniques, designed modifications to a laryngoscope, and authored over 100 research papers in addition to medical books and chapters. In addition, Dr. Dedo lectured at medical conferences and trained residents, fellows, and medical students at UCSF. Dr. Dedo’s work demonstrated that spasmodic dysphonia was not psychological but, in fact, neurological. This was a major milestone in advancing the understanding of SD. In 2015, the NSDA honored Dr. Dedo with an Award at our annual symposium. It was bestowed by NSDA President, Charlie Reavis, in recognition of the innovative work of Dr. Dedo in treating spasmodic dysphonia.

Cathy Jacobs has lived with spasmodic dysphonia since 1986. She is the founding member of one of the earliest SD support groups, Chicagoland. Cathy recently passed the baton of leadership to Kate Blaker, and she remains committed to supporting the group.

For 32 years, Cathy has made a mark in the history of the NSDA with her long tenure as Leader of the Chicagoland group and her service as Regional Coordinator for the Midwest Region. In 2008, she and her late husband Paul Jacobs were honored for all their hard work and dedication with the Midge Kovacs Annual Awareness Award. In 2007 and 2014, they hosted two beautiful luncheons with their family to benefit the NSDA. Each one was well attended, and the funds received propelled us forward in advancing SD research. Over the years, Cathy hosted picnics, Christmas parties, raffles, and meetings at her home.

Cathy has always shone like a star with her grace and servant’s heart. She has turned the daily challenge of coping with SD into a body of work which serves the needs of others with spasmodic dysphonia. She has attended several annual NSDA symposiums and has been asked a few times to speak on a panel of people living with SD. She has contributed to the NSDA cause generously with funds as well as service. We are all the richer because of the steadfast commitment of Cathy Jacobs.

This is a new section of Voices of Support. Our intention is to highlight some of the stories we hear from our 200+ Area Contact Leaders in our support leadership network and the various activities they are engaged in. Area Contact Leader from MI, Barbara Meteyer, recently made a new friend with SD. She met a lady who was recently diagnosed, and they enjoyed their lunch a great deal. In addition, Barbara brought her a goody bag of SD items. Area Contact Communications Coordinator from CA, Pat Hill, shared this story: “I recently had surgery and the anesthesiologist asked about my voice. I told him about SD and essential tremor. He said that he suspected that and wouldn’t use intubation. I thought this was a very important thing to tell the doctors as it could be life-threatening. We need to be our own advocates.”

It has been incredible to read about and view photos and videos of hundreds of participants across the US and in international countries. From October 7 – October 11, we came together in unity and camaraderie to raise awareness and funds for SD research. With our family and friends, we chose the activity and place to gather and walk to lend our support. How wonderful to see so many teams wearing our swag and raising our Walk for Talk banner. How fun that our pets were often there to accompany us in our efforts. It is exhilarating to see so many NSDA support group communities and Area Contact Leaders sharing their stories and participating. All donations will be matched through October 31. With gratitude and humility, we wonder how far our dreams can take us as we finish strong. Every step gets us closer to a cure! Read more here.

“What lies behind us and what lies before us are tiny matters compared to what lies within us.” (Ralph Waldo Emerson). Arizona Co-Leader, Esther Zack, commented: “We SD folks are so “unspoken” once we start this awful process. My leadership and my support come from my years when I could hardly speak a sentence. I want to be there for every person going through this as I have in past years.” With pride, passion, and commitment to the important work of the NSDA support network, we will continue to pursue the mission goals of our non-profit. We are the NSDA!

Mary Bifaro | John Comer | Carol Doles | Pat Hill | Dennis Kaszeta | Dot Sowerby

David Barton | James Anderson