Development Director from TN, Susan Beck, reported on a recent meeting: “We enjoyed lunch together and having time to chat about the doctors and our members’ experiences with these doctors.” Co-Leader of Valley of the Sun, AZ, Vicki Orazem, commented, “We discussed challenges we faced with a voice disorder over the holidays, and/or in general situations as well as strategies that we found helpful.” London Ontario Leader, Jennifer Roy, said that her group was not meeting during the pandemic as they were in isolation. Board Member from KS, Dorothy Tannahill-Moran, convened her support group meeting at a bakery.

Tanja Turner-Bell has stepped down as Co-Leader of the Birmingham, AL group due to a job relocation. We thank her for her past service. Cathleen McCulloch will continue to lead the Birmingham group. Leader of the Lehigh Valley, PA group, Gwen Pongracz, is relocating to NC and we are grateful for her service; Gwen will continue to serve as an Area Contact Leader from NC. Area Contact Leader from PA, John Hone, has stepped down; we thank him for his past service. Jacksonville Leader, Lisa Stennett, has stepped down as Leader and will continue to serve as an Area Contact Leader from FL. James Dorr will step down as Leader of the Milwaukee group and we thank him for his service; Kara Henderlight will take over the leadership role.

Area Contact Leader from Singapore, Emily Lim, co-wrote a children’s e-book resource with input from the Ministry of Health, Singapore on living with COVID.

NSDA Past President from NC, Dot Sowerby, continues to raise awareness about spasmodic dysphonia by serving as guest author at various groups. She spoke about her book, ‘Speechless No More: A Life Transformed by a Voice Disorder’, at the Combined Northern CA SD groups meeting which was facilitated by Silicon Valley Leader, Marcia Sterling. When she recently celebrated her 89^th birthday, the NSDA sent an email blast with photos and a further description of her new book. The response was incredibly warm in expressing gratitude in numerous email and Facebook messages from across the US and in our international regions. London Ontario Leader, Jennifer Roy, commented to Dot: “I noticed how similar our stories of frustration were until we learned more. Thank you for pioneering the NSDA where I have learned so much about my voice and self.”

Area Contact Leader from Canada, Becky Lacroix, wrote an inspiring book, “Unbalanced Journey: Life with 3 rare diseases and colostomy”. In her book, Becky encourages people to “trust your body, reach out for help, and educate yourself about the health challenges you have”. Feedback from the book has been positive. Becky’s local paper, ‘Gravenhurst Banner’ and her college alumni association published an article about her book. In addition, she has served as a guest speaker at various groups. As proof that her writing career is blossoming, Becky was a contributing author in a collective entitled, “We Are All Made of Love”. Her essay in this book, ‘Finding My Voice’, discusses how she attended the NSDA Symposium in Nashville. She reflects: “As a result of the conference (in addition to the fantastic feeling of meeting others with my rare disorder), I became an Area Contact Leader for the NSDA. I have had the opportunity to help and support other Canadians in several provinces with their voice disorders by lending a listening ear, leading them to the NSDA website, sharing what I’ve learned, and helping them stay strong.”

Several groups have already hosted a discussion of the book of Past President from NC, Dot Sowerby, “Speechless No More: A Life Transformed By A Voice Disorder”. Dot’s book is a lesson of courage and persistence. You may purchase the book by clicking HERE and Dot’s letter to book purchasers can be found HERE. Join Dot and Marcia Sterling for a book discussion on Saturday, May 21, at Noon ET.

When you are travelling to areas where our leaders are located, consider arranging a visit with them. Being together strengthens our relationships. Board Member from MA, Jane Gordon, visited Area Contact Leader, Stephie Mendel, and Support Group Leader, Marcia Sterling, during her recent trip to CA. Marcia shared this tip:” There is a free app called “Text to Speech” for your iPhone. I typed in the words “I have a neurological voice disorder and appreciate your patience if I am hard to understand.” Now if I’m in a crowded coffee shop or restaurant, I just have to push a button on my phone and those words come out loud and clear. Very helpful.”

When doing a mass email to your community, be sure to send blind carbon copy (bcc) rather than carbon copy (cc) due to privacy issues. Area Contact Leader Communications Coordinator from CA, Pat Hill, recently was able to donate to the NSDA by designating us as her charity of choice to honor a deceased friend’s spouse. At no cost to you, Amazon will donate 0.5% of eligible purchases to the NSDA when you shop on AmazonSmile at smile.amazon.com and select NSDA as your designated charity or click here.

Leader of the Mankato, MN group, Steve Jaeger, and members of his community spoke virtually to students studying in the field of communication disorders at MN State University, Mankato. A group activity entitled, Spasmodic Dysphonia Personal Reflection Questions, “generated a lot of discussion between the SD group and the MSU-M students”, according to Steve.

LA Leader, Toni Gold, spoke virtually to an SLP class at Cal State LA. According to Toni, “I spoke about my journey with SD including my search for a diagnosis and eventual treatment with Botox, which unfortunately has no positive impact on my voice. I emphasized that while speech therapy is not a cure, it may help to make speech less effortful for SD patients. Also, SLPs are invaluable in helping physicians distinguish between SD, vocal tremors and other voice disorders. I also spoke about the daily challenges I face while living with SD and my commitment to the NSDA in my role as Leader of the SD support group.”

Kara has been working with Leader, James Dorr, to re-energize the Milwaukee group. She will now officially take over as Leader. She recently moderated a Zoom call with the group. There were two guest speakers and some preset questions which the healthcare professionals answered. The chat room was active with more comments to enhance the discussion.

In addition, Kara has spoken to a graduate class of speech-language pathology students at the center where she was diagnosed with spasmodic dysphonia. According to Kara, “When I was first diagnosed, I felt alone because I knew no one with the same disorder. I then found the NSDA and felt a wonderful sense of community. I hope to provide a welcoming energy to those in my area and beyond.”

Thirteen Area Contact Leaders recently filled out our onboarding survey and agreed to be quoted. Their voices are so powerful, and the attached document shows their passion for the NSDA. Click here to download the file

Area Contact Director from MI, Dennis Kaszeta, summarized an effort to further engage our large pool of Area Contact Leaders: “The first meeting with Area Contact Persons now known as Area Contact Leaders was held on Zoom. Key national leaders were introduced, and all ACLs had a chance to share their thoughts about their current role, history of networking with healthcare professionals and their vision for the future. We also addressed the NSDA website tools and a newly forming outreach program with speech language pathologists that ACLs can take part in.”

According to Area Contact Leader from the United Kingdom, Wayne Parry: “I have had SD for the past 40 years. As much as it is debilitating, there is hope. SD changed my life when it struck me at age 30 just as I was climbing the ladder of success in business. There is no doubt that it affected my confidence and growth prospects. Through perseverance after 10 years, I found people who could help. I had numerous attempts at Botox and underwent thyroplasty surgery. Ever since, I have been able to cope and lead a relatively normal life. I have done it all so I am very happy to share my experiences.”

Area Contact Communications Coordinator from CA, Pat Hill, continues to display a sense of humor while living with spasmodic dysphonia: “I don’t let my voice stop me. For instance, adjacent to my hillside is the city's hillside and workers were clearing it due to the high fire danger BUT they weren't carrying the debris up the hill and instead were dumping it on an area that my gardener had just cleared. So, I went outside and told them not to do that and that they could use my trash bins to put debris in, which would be about halfway up the hillside. The supervisor said, "Yes ma'am!" but he didn't salute. Cracked me up. Guess I've still got some authority in my voice.”

We hope that our leaders will fully explore the information and resources which are available on our website. To that end, we have added this column to Voices of Support. In each issue, we will discuss a different part of our website. It is important to learn about the research pages of our website. Board Member from MA, Jane Gordon, has worked to organize the information. Click this link: https://dysphonia.org/research/nsda-research-grants/ Learn about NSDA-funded seed research grants, possible new treatments, and view the extensive list of grants already funded by the NSDA.

We mourn the passing of Area Contact Leader from CA, Patricia Quick. You can read more about her life. We appreciate her family suggesting that a donation could be made in her memory to the NSDA.

We also send our condolences to the family of Area Contact Leader from AZ, Wilma Myers, who died recently. According to her son, David: “Wilma had a passion for getting the word out about spasmodic dysphonia, and we would like to get something in place for people to donate to NSDA rather than sending flowers.” In addition, Wilma was a brain donor, and they were able to donate the tissue.

AZ Co-Leader, Esther Zack, commented recently on our Support Leadership Facebook Group forum: “It gives me great pleasure to hear from people who were so lost until they found the NSDA! I only wish I were younger when I started as a co-leader! It is such a rewarding position to be in!” Area Contact Leader from NC, Loretta Howell, stated: “I love encouraging and supporting others on their SD journey. The SD journey is not easy, especially for those who are new to this. Everyone needs support or just knowing that someone is there if they need help.” According to Area Contact Leader from TX, Jaime Schier, “I believe in giving back and want to convey that there is hope!” Area Contact Leader from CA, Susi Pensel, shared: “I have had SD for 33+ years, and I have not let it stop me from living fully. I am always grateful to receive help from friends and strangers if someone else doesn’t understand me. I believe that my positive attitude just may be contagious! No vaccine needed for that.” Area Contact Leader from NY, Melissa Roske, described her outreach: “I state my willingness to be contacted and recommend joining the local SD group and offer to meet for coffee, a stroll in the park, or whatever. The important thing to remember is that you are not alone.” Area Contact Leader from MN, Warren Bandel, stated: “I want to continue my journey to help others with SD. I have been in this role for over 25 years.”

Area Contact Director, Dennis Kaszeta, reflected: “Through my many contacts with ACLs around the country, it has become so clear that ACLs are a treasure chest of creativity! I have heard stories of compassionate, empathy driven means to engage the new contact. ACLs have used lunches, early morning coffees and/or emails etc. to engage the new contact. I've heard ACLs use lighthearted humor and friendly "neighbor next door conversations" to start building a relationship with the new contact. I've heard how ACLs have shared their own trail to find a diagnosis and their stories to cope, accept and live with a vocal disorder. So, in all we have a talented creative group making initial contact with the new contact and who create a friendly face for the NSDA.”

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

David Barton | James Anderson

April 16: World Voice Day | April 29: Virtual Leadership Workshop

April 30: Virtual Symposium | October 20-23: Walk for Talk