DYSPHONIA INTERNATIONAL
2023 RESEARCH GRANTS
Providing funding for seed grants nurtures and advances research into spasmodic dysphonia and related voice conditions. Through these grants, investigators are able to collect preliminary data, enabling them to seek more substantial funding from the National Institutes of Health. This strategic investment enables us to back multiple projects, fostering an expanded understanding of these vocal disorders. These grants are up to $75,000 annually. Many of our grants focus on potential new treatments, improved diagnostic tools, and identifying areas of the brain impacted by voice disorders.
ABSTRACTS OF NEWLY FUNDED GRANTS | Click on the + sign to open the description
Yaël Bensoussan, MD, and Stephanie Watts, PhD
University of South Florida, Tampa, FL
This proposed study addresses a Quality of Life (QOL) challenge with automatic speech recognition (ASR) systems. Researchers are trying to understand specific acoustic (sound) and aerodynamic (breath) features of voice that impact the ability of individuals with dysphonia to interact successfully with automatic speech recognition systems (ASR). To do this, researchers plan to recruit patients with vocal fold paralysis, spasmodic dysphonia, and tremor to participate in data collection. Participants will complete an assessment at two time points (1) at an initial visit and (2) following the appropriate treatment for their voice disorder (Botox® versus injection augmentation). Typically, this will be 1-2 weeks following intervention when voice is maximally benefitted. The evaluations, using AI, will include an acoustic and aerodynamic voice assessment, completion of quality-of-life scales and interaction with ASR systems. Researchers will determine error rates for the ASR pre- and post-treatment. They will then calculate which acoustic measures may be impacting the error rates. The researchers are hopeful that, unlike approaches in the past, this information may be useful for informing algorithms/neural networks for better signal detection.
Zhaoyan Zhang, PhD
University of California, Los Angeles, CA
Spasmodic dysphonia is often evaluated in various subjective assessments, including auditory-perceptual evaluation, clinical visual evaluation of vocal fold vibration, and patient self-reported scales. These assessments are subjective in nature and rely heavily on clinician experience, and thus suffer from high inter- and intra-rater variability. These limitations often introduce outcome measure errors that confound treatment effects in clinical trials, making it difficult to evaluate and compare the efficacy of different treatment options convincingly. An important goal of SD research is thus to identify objective measures of severity. In a previous study through the Dystonia Coalition, we developed a computer algorithm that automatically extracts metrics of vocal fold vibration in SD patients. Our preliminary results showed that changes in these metrics were correlated with perceptual ratings of SD. This study aims to further evaluate these metrics’ effectiveness in quantifying treatment efficacy in alleviating LD symptoms and improving voice quality in SD patients
Christopher Honey, MD, University of British Columbia, Vancouver, BC, Canada, in collaboration with Stacey Halum, MD, Indiana University, Indianapolis, IN
Our Dysphonia-International-sponsored trial of deep brain stimulation for six patients with adductor spasmodic dysphonia showed that this technique was safe and could improve both the quality of voice and the quality of life for these patients. That successfully completed Phase 1 trial has been accepted for publication in the prestigious peer-reviewed journal Neurosurgery. This funding is to support a Phase 2 surgical trial to confirm that deep brain stimulation can improve the quality of life in patients with severe spasmodic dysphonia. This trial will involve ten patients with adductor SD and six patients with abductor SD. This double-blind study will eliminate any possible placebo effect. Patients will have DBS surgery, and then their stimulation will be turned “on” for 3 months or “off” for 3 months without the patients knowing. Their voice and quality of life will be measured during each of these settings and then compared to see which was better. The safety of this treatment will also be assessed by recording any complications or adverse events. Confirmation of diagnosis will be done in conjunction with Dr. Stacey Halum at Indiana University. We hope to provide new treatment options for patients. While we are studying the benefits of this therapy, we plan to investigate the brain pathways causing spasmodic dysphonia. This will provide novel insights into the cause of this condition and may allow new non-surgical treatments in the future.
DR. YAEL BENSOUSSAN
DR. STEPHANIE WATTS
DR. ZHAOYAN ZHANG
DR. CHRISTOPHER HONEY
DR. STACEY HALUM
EXPANSION AND PROGRESS OVER THE YEARS
In 2007, when our Scientific Advisory Board was established, grant funding was limited to a range of $10,000 to $20,000. While this amount was significant for our organization at that time, attracting applications posed a challenge. Thanks to the steadfast support of our community over the years, we have increased the research grant funding up to $75,000 annually, making it significantly more appealing for potential investigators. Furthermore, we have done away with the application deadline, firmly believing that valuable research should not have to wait.
We have also seen an increase in new investigators who are focusing on voice research, particularly in spasmodic dysphonia and related voice conditions. Increased funding has certainly played a role, and we have actively pursued the recruitment of new researchers through direct outreach, participation in international research conferences on dystonia, and networking via our Scientific Advisory Board. Our research program has undergone expansion to include Travel Research Awards, enabling us to establish collaborative partnerships with professional voice organizations and provide valuable support to emerging investigators.
Our unwavering goal remains constant—to accelerate our understanding and propel the science forward in the quest for improved treatments and cures for spasmodic dysphonia and related voice conditions. Furthermore, we eliminated the application deadline, firmly believing valuable research should not have to wait.
NEW FOR 2023 | AUGMENTIVE FUNDING FOR GRANTS
CLINICAL TRIAL FOR NEW NEUROTOXIN LAUNCHED
Dysphonia International recently partnered with the UCSF Voice & Swallowing Center to augment funding for a new clinical trial to evaluate the effectiveness of DAXXIFY as a treatment for people with adductor spasmodic dysphonia. Dr. Clark Rosen (pictured) is leading the study on this new neurotoxin.
Dysphonia International plays another role in research by providing smaller grants to our investigators. A modest infusion of funding can be critical in assisting our researchers in advancing a project. This typically ranges between $10,000 to $25,000. This could involve recruiting additional participants to enhance the robustness of a study, co-sponsoring a grant with another institution, or expanding the number of medical devices available for testing in a study. The following investigators/institutions received funding for their ongoing research in 2023.
- Novel Application of rTMS in Abductor Laryngeal Dystonia | Teresa Jacobson Kimberley, PhD
- Wearable Non-Invasive Neuromodulation Technology for the Symptomatic Treatment of Spasmodic Dysphonia | Jürgen Konczak, PhD,
- DAXXIFY Clinical Trial | UCSF Voice & Swallowing Center
- Brainstem Activation after Injection Laryngoplasty for Unilateral Vocal Fold Paralysis | G. Desuter MD, PhD
- Patient Center-Outcomes Project of the Dystonia Coalition
- Direct Quantification of Adductor Spasmodic Dysphonia with High-Resolution Manometry | Jesse D. Hoffmeister (co-funded with the Dystonia Coalition)
WELCOME TO THE NEWEST MEMBERS OF OUR SCIENTIFIC ADVISORY BOARD
The primary responsibilities of our Scientific Advisory Board (SAB) are to review grant applications, chart future research directions, and foster collaboration with researchers. We are excited to announce the recent appointment of three new members of the Scientific Advisory Board: David Lott, MD (Laryngology), Scott Norris, MD (Movement Disorders), and Susan Thibeault, PhD, CCC-SLP (Speech Pathology).
Led by Chairperson, Gerald Berke, MD (Laryngology), they will be joining our current members Craig Evinger, PhD (Neuroscience), Laurie Ozelius, PhD (Genetics), and Julie Barkmeier-Kraemer, PhD, CCC-SLP (Speech Pathology). Each one brings their own unique perspective to voice research, and we are honored that they have volunteered to serve on behalf of our community.
DR. DAVID LOTT
DR. SCOTT NORRIS
DR. SUSAN THIBEAULT
VIRTUAL WORKSHOP HOSTED FOR INVESTIGATORS
In 2019, Dysphonia International convened its researchers for an in-person half-day conference in conjunction with the annual symposium. On November 3, 2023, we once again hosted a meeting, but this time virtually, which included a number of Dysphonia International-funded investigators, all of whom are studying spasmodic dysphonia, a form of laryngeal dystonia. The overall concept for the meeting was for these researchers to identify areas of commonality and discrepancies in their conceptual framework regarding the cause or causes of spasmodic dysphonia. We wanted to explore these various approaches and increase the collaboration amongst our investigators, as much of the currently funded research could complement another grant. Dr. Gerald Berke, the Chair of the Scientific Advisory Board, moderated the meeting and prepared the summary that provides an overview of the participant’s research. It is apparent from the discussion at this seminar that patients with spasmodic dysphonia demonstrate a somatosensory defect in their ability to control the excitatory function of the cortical speech center and in other areas of the brain. Specifically, why this is occurring, whether it is a chemical imbalance or a structural defect, is a subject of ongoing research. We were pleased to see the interaction and interest among the attending researchers. All in attendance were supportive and appreciative of the suggestion to continue discussions with additional workshops in the future. We appreciate the commitment of our researchers in seeking answers to enhance our understanding of spasmodic dysphonia and related voice conditions, ultimately striving to discover a cure.
INTERNATIONAL OUTREACH
2023 TRAVEL SCHOLARSHIPS AND AWARDS INFORMATION
2023 AWARD ORGANIZATIONS
- American Laryngological Association
- The European Laryngological Society
- Fall Voice Conference
- The Voice Foundation
- Winter Days of Laryngology
Dysphonia International provides awards and travel funding for annual meetings hosted by professional associations with a focus on voice research and clinical advancement. By facilitating the attendance of investigators at these gatherings to present their research on spasmodic dysphonia and related voice conditions, we foster connections that enhance their engagement with voice-related issues. The administration of these award programs is handled by the respective organization, and they decide on the type of program that aligns most effectively with their conference. The awards typically range between $250 to $1000. In 2023, we funded twelve travel scholarships and two conference awards. This year, we also partnered with two new laryngology associations in Europe. This collaborative approach aims to sustain interest in voice conditions and ensure their continual focus in future research endeavors. This strategic collaboration positions Dysphonia International as an organization supporting individuals with SD and related voice conditions and as a dedicated partner for healthcare professionals and researchers in the voice field, serving as a valuable ongoing resource for them. The response has been wonderful, and we continue to expand this program to work with even more professional associations.
2023 PHOTO GALLERY
PARTICIPATION AT 2023 PROFESSIONAL CONFERENCES
2023 Voice AI Symposium | This Symposium was a unique, first-of-its-kind gathering of experts across industries to explore the impact voice can have on health care. The event was hosted by Bridge2AI-Voice Consortium, a program based on the NIH-funded study called Voice as a Biomarker of Health that is co-led by Dr. Yaël Bensoussan, from USF Health Morsani College of Medicine and Dr. Olivier Elemento from Weill Cornell Medicine, who are co-principal investigators for the project. President Charlie Reavis was invited to participate in the “The ‘Why’ of Voice AI” panel discussion alongside individuals from research institutes, tech firms, and even Google. He was the sole representative on any of the panels living with a vocal disorder, making him the authentic voice of the patient community during this inaugural symposium. The 2024 Bridge2AI – Voice Symposium will take place May 1-2, 2024, in Tampa, FL, right before the 2024 Dysphonia International Symposium, which takes place on May 4, 2024. Our collaboration will continue when this meeting once again brings together scientists, ethicists, advocates, patients, clinicians, and technology experts, all with a shared passion for the transformative potential of voice biomarkers in healthcare.
New York Laryngological Society | Founded in 1873, this group is the second oldest medical society in the United States. We were honored to celebrate this anniversary by exhibiting at the 150th Anniversary Educational Symposium, which brought together an internationally recognized group of otolaryngologists to discuss a wide range of laryngological topics.
2023 PROFESSIONAL CONFERENCES
- Bridge2AI – Voice Symposium
- 150th Anniversary Educational Symposium of the New York Laryngological Society
- Samuel Belzberg 6th International Dystonia Symposium
- Fall Voice
- American Speech-Hearing Association (ASHA)
Fall Voice Conference | Bringing together voice specialists, this meeting takes a multi-disciplinary approach to managing vocal disorders and focuses on both clinical care and research. Vice President Susan Beck and Program and Operations Manager Nicole Leitner met many healthcare professionals who are integral to our organization. Susan had the opportunity to speak to the laryngology fellows in attendance and invite them to partner with our organization. In addition, many of the Travel Award recipients stopped by to share their appreciation for our organization.
American Speech-Language-Hearing Association Convention | With over 15,000 people in attendance, this convention is always a highlight for our organization. Past President and Current Board Member Dot Sowerby and Vice President Susan Beck helped raise awareness and education for practicing SLPs and the students, who are the next generation of clinicians.
Samuel Belzberg 6th International Dystonia Symposium | Held in Dublin, this meeting brought together researchers from around the world. Almost a decade after the last meeting, this symposium offered a comprehensive overview of crucial scientific developments in the field, fostering discussions within and beyond disciplines. This event also hosted the annual Dystonia Coalition meeting. Executive Director Kimberly Kuman, who serves as the Patient Advocacy Liaison for the Dystonia Coalition, was able to attend, not only represented Dysphonia International but also engaged with researchers in the dystonia field who may be less familiar with spasmodic dysphonia, a focal form of laryngeal dystonia. This event has sparked numerous conversations with investigators regarding collaboration and the submission of research grants. We hope that the extensive knowledge about other forms of dystonias will prove relevant and applicable to spasmodic dysphonia. In addition, Kimberly was able to attend the patient conference hosted by Dystonia Ireland and Dystonia Europe and share educational and awareness materials on spasmodic dysphonia and related voice conditions.
CHANGES AT THE NATIONAL INSTITUTES OF HEALTH | NIDCD
The primary source of funding for research on spasmodic dysphonia is the National Institutes of Health (NIH), specifically the National Institute on Deafness and Other Communication Disorders (NIDCD). For numerous years, Dr. Lana Shekim served as the Program Officer for the Voice and Speech Program at NIDCD. Her contribution has been pivotal in ensuring that spasmodic dysphonia and related voice conditions were incorporated into the comprehensive strategic plan for NIDCD. Dr. Shekim collaborated closely with investigators and actively engaged with Dysphonia International. She frequently attended our local support group meetings and symposiums in Washington DC, particularly when they were held in the DC area.
Dr. Shekim recently retired from her position, and in September, Dr. Lisa Kopf, PhD, assumed that role. Dr. Kopf received a bachelor’s degree in speech pathology and audiology from the University of Virginia, a master’s degree in speech-language pathology from the University of Iowa, and a Ph.D. in communicative sciences and disorders from Michigan State University. She completed a postdoctoral fellowship at the University of Iowa, working with faculty in communication sciences and disorders and neurosurgery. Dr. Kopf’s primary research interest is in clinical voice disorders. During her doctoral training, she worked with NIDCD-funded investigators in the area of voice disorders. We thank Dr. Shekim for her years of dedicated service and extend a warm welcome to Dr. Kopf and look forward to working with her.
In addition, Executive Director Kimberly Kuman was able to meet Dr. Lisa Kopf in September when they were both participating in the National Deafness and Other Communication Disorders Advisory Council meeting. Kimberly was recently invited to serve as an ad hoc attendee. She is honored to serve in this role and be able to represent the voices in our community.
THE VOICE OF OUR COMMUNITY ADVANCES RESEARCH
CONVERSATIONS TURN INTO RESEARCH | Dysphonia International collaborated with Dr. Michael Johns and his colleagues on a study exploring the use of cannabinoids as a treatment for spasmodic dysphonia. The inspiration for this study arose during a virtual meeting of the Los Angeles Support Group, where a presentation on cannabis highlighted the lack of available data regarding its use in individuals with spasmodic dysphonia. Subsequently, we worked with Dr. Johns on an electronic survey, which was disseminated to our community, and the study results were published in the Journal of Voice in June.
MODEST FUNDING EXPANDS STUDIES | After the webinar featuring Dr. Jürgen Konczak, there was notable excitement from the attendees about the potential symptom reduction in spasmodic dysphonia through the use of vibrotactile stimulators. Subsequent discussions with Dr. Konczak revealed that modest support could fund the production of additional devices that could be distributed, and the study could be expanded. Recognizing the direct benefit to our community, the Board of Directors wholeheartedly approved this initiative!
OUR COMMUNITY STEPS UP | Recruiting participants for research and clinical trials, particularly for a rare disorder, often poses a significant obstacle to advancing a study. Over the years, we’ve collaborated closely with our researchers to facilitate the identification of participants. Through email communications, virtual meeting presentations, and peer-to-peer discussions, we’ve consistently moved studies forward and even broadened their scope to encompass abductor spasmodic dysphonia. We have confidence that our members will always respond to the call from our researchers.
WEBINARS ON RESEARCH PROVIDE REAL-TIME UPDATES
This year, four of our webinars centered on advancements in research, showcasing some of our current grant recipients. Additionally, Dr. Gerald Berke, Chair of the Scientific Advisory Board, provided a comprehensive update on ongoing voice research and engaged participants in a Q&A session. These sessions consistently draw substantial attendance, typically ranging from 400 to 700 registered participants representing at least 15 countries.
OUR RESEARCHERS WALK FOR TALK WITH US
Dr. Teresa Jacobson Kimberley, who leads the Brain Recovery Lab at MGH Institute, shares the impact of our funding of her research.
In 2020, Walk for Talk was introduced as a way to unite our community. It was designed to include not only individuals living with spasmodic dysphonia and related voice conditions but also the broader community supporting them, including family, friends, healthcare professionals, researchers, students, neighbors, co-workers, and even pets—in a fun and creative way. Right from the beginning, our healthcare professionals and researchers showed remarkable support for this event. Each year, more researchers participated, even including their families and friends. Some have joined a walk event organized by a local support group, and others have coordinated their own! It’s inspiring to see our researchers walking with us as we walk for them to raise funds so they can find the answers to better understand spasmodic dysphonia and related voice conditions. Walk for Talk brings hope for the future. In the last four years, we have raised close to half a million dollars, and all donations matched, dollar-for-dollar, meaning we can fund even more research. Every step gets us closer to a cure!
