NATIONAL SPASMODIC DYSPHONIA ASSOCIATION
300 PARK BOULEVARD, ITASCA, IL 60143 www.dysphonia.org

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Organizations Filed Purposes: THE NATIONAL SPASMODIC DYSPHONIA ASSOCIATION IS DEDICATED TO IMPROVING THE LIVES OF PEOPLE AFFECTED BY SPASMODIC DYSPHONIA (LARYNGEAL DYSTONIA) AND RELATED VOICE CONDITIONS THROUGH RESEARCH, EDUCATION, AWARENESS AND SUPPORT. THE NSDA INCLUDES A COMMUNITY OF DEDICATED VOLUNTEERS, HEALTHCARE PROFESSIONALS, FRIENDS AND FAMILIES, AND STAFF DEDICATED TO THE VISION OF ERADICATING SPASMODIC DYSPHONIA (LARYNGEAL DYSTONIA) AND RELATED VOICE CONDITIONS. WE FUND RESEARCH TO ADVANCE THE UNDERSTANDING OF THE CAUSES OF AND TREATMENTS FOR SPASMODIC DYSPHONIA AND RELATED VOICE CONDITIONS. WE EDUCATE TO HELP REDUCE THE TIME TO DIAGNOSIS. WE RAISE AWARENESS TO REDUCE THE STIGMA AND ISOLATION AROUND HAVING A VOICE DISORDER. WE PROVIDE SUPPORT TO THOSE AFFECTED AND THEIR FAMILIES THROUGH SYMPOSIUMS, SUPPORT GROUPS, AND ON-LINE RESOURCES SO THAT NO ONE FEELS ALONE. SPASMODIC DYSPHONIA, ALSO KNOWN AS LARYNGEAL DYSTONIA, IS A NEUROLOGICAL DISORDER THAT AFFECTS THE VOICE, MAKING SPEAKING CHALLENGING.

THE NATIONAL SPASMODIC DYSPHONIA ASSOCIATION (NSDA) IS DEDICATED TO IMPROVING THE LIVES OF PEOPLE AFFECTED BY SPASMODIC DYSPHONIA AND RELATED VOICE CONDITIONS THROUGH RESEARCH, EDUCATION, AWARENESS AND SUPPORT.

AWARENESS AND EDUCATION - THE NSDA RAISES AWARENESS ABOUT SPASMODIC DYSPHONIA AND RELATED VOICE CONDITIONS THROUGH EDUCATION, OUTREACH, AND ADVOCACY ALLOWING FOR A BETTER UNDERSTANDING AND QUICKER DIAGNOSIS OF THIS DISORDER. WE LAUNCHED A MODERNIZED WEBSITE (DYSPHONIA.ORG) IN 2019 THAT IS DESIGNED TO ENSURE THAT WHEN SOMEONE NEEDS HELP, THEY CAN FIND IT QUICKLY. THE NEW EXPANDED SITE ADDRESSES THE EMOTIONAL, PHYSICAL AND SOCIAL NEEDS OF SOMEONE LIVING WITH A VOICE DISORDER AND REPRESENTS THE EXPANDED MISSION OF THE NSDA. IT ALSO INCLUDES A DIRECTORY OF OVER 700 HEALTHCARE PROFESSIONALS WHO SPECIALIZE IN VOICE DISORDERS AND CAN CORRECTLY DIAGNOSE AND TREAT PEOPLE. THE NSDA PUBLISHES ITS ANNUAL NEWSLETTER, OUR VOICE, ALONG WITH A BIMONTHLY ELECTRONIC NEWSLETTER, E-VOICE TO OVER 5,000 PEOPLE AFFECTED BY THESE VOICE CONDITIONS, HEALTHCARE PROFESSIONALS AND OTHERS INTERESTED IN LEARNING MORE ABOUT THE DISORDER. IN 2019, THE NSDA SYMPOSIUM WAS HOSTED IN BOSTON, MA, TO BRING TOGETHER PEOPLE AND HEAR THE LATEST UPDATES ON TREATMENT OPTIONS AND RESEARCH. NSDA ATTENDED MULTIPLE VOICE-RELATED PROFESSIONAL CONFERENCES AND ADVOCATED FOR PEOPLE WITH VOICE DISORDERS THROUGH A VIRTUAL DYSTONIA ADVOCACY NETWORK. IN ADDITION, WE HAVE EXPANDED OUR OUTREACH THROUGH SOCIAL MEDIA CHANNELS INCLUDING FACEBOOK, YOUTUBE, TWITTER, INSTAGRAM AND LINDEDIN.

SUPPORT SUPPORTING PEOPLE WITH SPASMODIC DYSPHONIA AND RELATED VOICE CONDITIONS HAS BEEN A PART OF NSDA MISSION SINCE IT WAS FOUNDED. THERE ARE CURRENTLY JUST OVER 55 NSDA SUPPORT GROUPS AND OVER 240 AREA CONTACT PERSONS ON OUR SUPPORT LEADERSHIP NETWORK. THE NSDA PROVIDES A WIDE RANGE OF SUPPORT OPTIONS TO HELP INDIVIDUALS WITH SD AND RELATED VOICE CONDITIONS AND THEIR FAMILIES LEARN TO LIVE MORE EFFECTIVELY WITH THIS DISORDER. BOOKS, BROCHURES, AND VIDEOS ARE PUBLISHED ALONG WITH RESOURCES AND TOOLS. AN ON-LINE BULLETIN BOARD ALONG WITH SOCIAL MEDIA TOOLS SUCH AS FACEBOOK AND TWITTER EXPAND THE REACH FOR SUPPORT AND PROVIDE THE OPPORTUNITY TO EXCHANGE IDEAS, DISCUSS PERSONAL EXPERIENCES, PROVIDE SURVEY FEEDBACK, PROVIDE NEWS AND INFORMATION ABOUT IMPORTANT RESEARCH AND MOST IMPORTANTLY, CONNECT WITH OTHERS TO REDUCE THE FEELING OF ISOLATION. THE NSDA VOLUNTEER LEADERSHIP NETWORK IS RECOGNIZED QUARTERLY IN AN ON-LINE NEWSLETTER, VOICES OF SUPPORT, AND THEY ARE INVITED TO PARTICIPATE IN AN ANNUAL LEADERSHIP WORKSHOP IN CONJUNCTION WITH THE SYMPOSIUM. OUR MEMBERS ARE ACTIVE AND PROVIDE EACH OTHER WITH COPING TECHNIQUES AND THINGS THAT WORKED TO HELP THE NEWLY DIAGNOSED OR THOSE GOING THROUGH DIFFICULT TIMES. WE HAVE INCREASED OUR FOCUS ON LIVING WITH VOICE DISORDERS.

RESEARCH - THE NSDA IS STRONGLY COMMITTED TO UNDERSTANDING THE CAUSES OF SPASMODIC DYSPHONIA AND RELATED VOICE CONDITIONS BY SUPPORTING RESEARCH TO FIND BETTER TREATMENTS AND ULTIMATELY A CURE. WORKING WITH A SCIENTIFIC ADVISORY BOARD COMPRISED OF THE LEADING EXPERTS IN THE FIELD, THE NSDA FUNDS RESEARCH GRANTS, HELPS TO FACILITATE RESEARCH, AND PROMOTES RESEARCH TRIALS TO ITS MEMBERSHIP. AS PART OF THE ANNUAL MEETINGS IN 2019, THE NSDA HOSTED HALF-DAY RESEARCH WORKSHOP BRINGING TOGETHER EIGHT RESEARCHERS TO PRESENT THEIR WORK, DISCUSS NEXT STEPS, AND EXPLORE WHERE COLLABORATIONS MAY OCCUR TO HELP ADVANCE OUR UNDERSTANDING OF SPASMODIC DYSPHONIA AND RELATED VOICE CONDITIONS. THE NSDA FUNDED A RESEARCH GRANT ENTITLED, "WEARABLE NON-INVASIVE NEUROMODULATION TECHNOLOGY FOR THE SYMPTOMATIC TREATMENT OF SPASMODIC DYSPHONIA." THIS GRANT, LED BY JURGEN KONCZAK, PHD, FROM THE UNIVERSITY OF MINNESOTA, MINNEAPOLIS, MN, WILL EXPLORE IF TREATMENT WITH VIBRO-TACTILE STIMULATION OF THE LARYNX CAN EFFECTIVELY REDUCE VOICE SYMPTOMS IN PEOPLE WITH ABDUCTOR SPASMODIC DYSPHONIA. THE NSDA ENCOURAGES YOUNG RESEARCHERS TO BECOME MORE INVOLVED THROUGH THE SPONSORSHIP OF RESEARCH TRAVEL AWARDS TO THE ANNUAL MEETINGS OF PROFESSIONAL ORGANIZATIONS TO PRESENT THEIR WORK. THIS PROGRAM INCLUDES THE MEETINGS OF AMERICAN ACADEMY OF OTOLARYNGOLOGY, AMERICAN LARYNGOLOGICAL ASSOCIATION, FALL VOICE CONFERENCE, SIN CITY LARYNGOLOGY, TRIOLOGICAL SOCIETY, AND VOICE FOUNDATION. THE NSDA IS AN ACTIVE MEMBER OF THE DYSTONIA COALITION, A NIH-FUNDED INITIATIVE FORMED TO ADVANCE CLINICAL RESEARCH FOR FOCAL DYSTONIA. IN ADDITION, WE PROVIDE ADMINISTRATIVE SUPPORT FOR THE GLOBAL DYSTONIA REGISTRY AND ARE ACTIVE IN THE DYSTONIA BRAIN COLLECTIVE, WORKING WITH OTHER DYSTONIA ORGANIZATIONS TO ADVANCE THE UNDERSTANDING OF ALL FORMS OF DYSTONIA, INCLUDING SPASMODIC DYSPHONIA.

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