National Spasmodic Dysphonia Association

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.

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. ONCE AGAIN, THE NSDA SYMPOSIUM WAS HELD VIRTUALLY WITH A COMBINATION OF PRE-RECORDED PRESENTATIONS AND LIVE PANEL DISCUSSIONS, GENERATING OVER EIGHT HOURS OF NEW CONTENT. THE SECOND ANNUAL WALK FOR TALK TO BENEFIT THE NATIONAL SPASMODIC DYSPHONIA ASSOCIATION TOOK PLACE OCTOBER 7-11, 2021, ONCE AGAIN BRINGING OUR COMMUNITY TOGETHER TO RAISE AWARENESS AND FUNDS TO HELP FIND ANSWERS FOR SPASMODIC DYSPHONIA AND RELATED VOICE CONDITIONS. THE WALK INCLUDED PEOPLE LIVING WITH A VOICE DISORDER, FAMILY, FRIENDS, AND HEALTHCARE PROFESSIONALS ALONG WITH DOGS, CATS, HORSES, AND A ROOSTER. SUPPORT GROUP PARTICIPATION INCREASED WITH 17 GROUPS MEETING IN-PERSON ALONG WITH 13 AREA CONTACT LEADERS. WE ALSO SAW MORE INVOLVEMENT WITH GENERATIONS WALKING TOGETHER. WITH THE COMMUNITY'S SUPPORT, $122,663 WAS RAISED; ALL THOSE GIFTS WERE MATCHED FOR A TOTAL OF $245,326. REPRESENTATIVES FROM THE NSDA ATTENDED BOTH THE FALL VOICE CONFERENCE AND THE ASHA CONVENTION. WITH THE THEME OF MANY VOICES, ONE WORLD, WE WORKED TO RAISE AWARENESS ON APRIL 16, WORLD VOICE DAY.

SUPPORTING PEOPLE WITH SPASMODIC DYSPHONIA AND RELATED VOICE CONDITIONS HAS BEEN A PART OF THE NSDA MISSION SINCE IT WAS FOUNDED. THERE ARE CURRENTLY JUST OVER 50 NSDA SUPPORT GROUPS AND CLOSE TO 100 AREA CONTACT LEADERS. WE CONTINUED TO SUPPORT OUR COMMUNITY THROUGH VIRTUAL MEETINGS. OUR SUPPORT GROUP LEADERS HAVE READILY JUMPED IN AND OFTENTIMES, WE HAVE HOSTED BOTH STATE-WIDE AND REGIONAL MEETINGS TO PROVIDE EVEN MORE SUPPORT. WE ARE IDENTIFYING NEW PEOPLE TO BECOME AREA CONTACT LEADERS TO FURTHER EXPAND OUR NETWORK. MOST IMPORTANTLY, OUR COMMUNITY IS TRULY GETTING TO KNOW THE ORGANIZATION IN A WAY IT HASN'T BEFORE, SO THEY KNOW WE REALLY DO CARE ABOUT THEM AND THEIR VOICE. OUR SUPPORT NETWORK IS RECOGNIZED QUARTERLY IN AN ON-LINE NEWSLETTER, VOICES OF SUPPORT, AND THEY ARE INVITED TO PARTICIPATE IN AN ANNUAL LEADERSHIP WORKSHOP WHICH IS HELD VIRTUALLY. 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. REGARDLESS OF THE CAUSE OF A VOICE DISORDER, OUR MEMBERS CAN PROVIDE EACH OTHER WITH COPING TECHNIQUES TO HELP THE NEWLY DIAGNOSED OR THOSE GOING THROUGH DIFFICULT TIMES.

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. WHILE RESEARCH WAS STILL SLOW TO RAMP UP BECAUSE OF COVID, WE ONCE AGAIN TOOK ADVANTAGE OF VIRTUAL MEETINGS WITH SCIENTIFIC ADVISORY BOARD CHAIR, DR. GERALD BERKE CONNECTING WITH NEW RESEARCHER TEAMS AND CREATING COLLABORATIVE EFFORTS THAT WILL HOPEFULLY LEAD TO NEW GRANT APPLICATIONS. A GRANT ENTITLED, INDIVIDUAL-SPECIFIC BRAIN FUNCTIONAL CONNECTIVITY MAPPING OF THERAPEUTIC RESPONSE IN SPASMODIC DYSPHONIA, LED BY SCOTT NORRIS, MD AND EVAN GORDON, PHD, AT WASHINGTON UNIVERSITY, ST. LOUIS, MO, WAS FUNDED TO MEASURE AND COMPARE BRAIN ACTIVITY IN SUBJECTS BEFORE AND AFTER SUCCESSFUL BOTULINUM TOXIN INJECTIONS USING ADVANCED MAGNETIC RESONANCE IMAGING (MRI). THIS WORK MAY HELP TO ADVISE OTHER TREATMENT GRANTS FUNDED BY THE NSDA. ANOTHER GRANT, ASSESSING LARYNGOPHARYNGEAL SENSATION IN PATIENTS WITH ADDUCTOR SPASMODIC DYSPHONIA USING A NOVEL TACTILE BUCKLE AESTHESIMETER, WITH CLARK ROSEN, MD, AT THE UCSF WILL EXPLORE A POSSIBLE NEW DIAGNOSTIC TOOL THAT MAY HELP US BETTER UNDERSTAND HOW THE VOCAL FOLDS RESPOND TO STIMULI IN SPASMODIC DYSPHONIA. IN ADDITION, THERE IS A TRAINING COMPONENT FOR JOSEPH KIDANE, A FOURTH-YEAR MEDICAL STUDENT WHO IS PURSUING A DEDICATED RESEARCH CAREER IN LARYNGOLOGY. DR. ROSEN WILL SERVE AS HIS MENTOR. ANOTHER GRANT FOR A POSSIBLE NEW TREATMENT OPTION WAS FUNDED, NETWORK TARGETS TRANSCRANIAL DIRECT CURRENT STIMULATION AS A TREATMENT FOR LARYNGEAL DYSTONIA, LED VINCENT GRACCO, PHD, AT HASKIN LABORATORIES, NEW HAVEN, CT. THE NSDA ENCOURAGES YOUNG RESEARCHERS TO BECOME MORE INVOLVED THROUGH THE SPONSORSHIP OF RESEARCH AWARDS TO TRAVEL TO THE ANNUAL MEETINGS OF PROFESSIONAL VOICE ORGANIZATIONS. THESE INCLUDED MEETINGS OF THE AMERICAN LARYNGOLOGICAL ASSOCIATION, FALL VOICE CONFERENCE, AND SIN CITY LARYNGOLOGY. 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.