Presenters at Rare Diseases and Disorders: SLP Assessment and Intervention

Theresa Bartolotta, PhD, CCC-SLP, is Director of Speech-Language Pathology at Tender Ones Therapy Services in Dacula, Georgia. She works clinically with pediatric patients with complex communication disorders, including autism, Down syndrome, and Rett syndrome. She also enjoys mentoring new clinicians and students. Theresa is also a professor in the Department of Speech-Language Pathology at Thomas Jefferson University in Philadelphia, Pennsylvania, where she teaches courses in pediatric and adolescent language disorders and genetics in communication disorders. Theresa has conducted several research studies in communication in Rett syndrome and is co-author of the recently published Rett Syndrome Communication Guidelines. She serves as consultant on communication to the International Rett Syndrome Foundation and is also a member of the Advisory Board to Monmouth University’s Program for Research and Support for Rett Syndrome, in West Long Branch, New Jersey. Theresa also has significant experience in accreditation and served as a site visitor for the Council on Academic Accreditation in Audiology and Speech-Language Pathology for over 10 years.

Financial Disclosures:

• Financial compensation from ASHA for this presentation
• Consultant on communication for the International Rett Syndrome Foundation

Nonfinancial Disclosures:

• Parent of a young adult who has Rett syndrome

Andrea Barton-Hulsey, PhD, CCC-SLP (she/her/hers) is an Assistant Professor of Communication Sciences and Disorders at Florida State University. She conducts research to understand factors that support langauge and literacy development in individuals with intellectual and developmental disabilities. Her work includes people who use augmentative and alternative communication systems and their families, and seeks to inform both theory and practice in language and literacy development across the life span.

Financial Disclosures:

• Financial compensation from ASHA for this presentation

Nonfinancial Disclosures:

• None

Adriane Baylis, PhD, CCC-SLP (she/her/hers) is director of the Velopharyngeal Dysfunction Program and co-director of the 22q Center for the Department of Plastic Surgery at Nationwide Children’s Hospital (NCH) in Columbus, Ohio. She is also Clinical Associate Professor and Chair of the Research Committee for the Department of Plastic and Reconstructive Surgery at The Ohio State University College of Medicine. She will serve as president of the American Cleft Palate Craniofacial Association in 2024. Dr. Baylis directs the Craniofacial Speech Fellowship at NCH and is actively involved in several multisite NIH grants focused on speech outcomes in children with cleft palate and craniofacial anomalies.

Financial Disclosures:

• Financial compensation from ASHA for this presentation
• Employee of Nationwide Children's Hospital and the Ohio State University
• Grant funding from NIH

Nonfinancial Disclosures:

• Planning committee for this online conference
• President of the American Cleft Palate Craniofacial Association

Alexandria Cook, BA, has a degree in psychology and is currently a research assistant at Oregon Health and Science University (OHSU) and the chief operating officer of the Communication Matrix Foundation. She has worked as a research assistant, librarian’s assistant, and a counselor at a camp for teens with autism. Her research interests include motivational, educational, and neurological development of children of all ages and developmental capabilities. She is committed to offering research and tools to the largest audience to support individuals with complex communication needs.

Financial Disclosures:

• Co-founder and chief operating officer for Communication Matrix Foundation
• Salary from the Communication Matrix Foundation
• Employee of Oregon Health and Science University (OHSU)
• Financial compensation from ASHA for this presentation

Nonfinancial Disclosures:

• None

Caitlin Cummings, MA, CCC-SLP (she/her/hers) is a bilingual speech-language pathologist at Nationwide Children's Hospital, where she specializes in the evaluation and treatment of communication disorders in children with cleft lip and palate as well as English-Spanish speaking children. She is also a doctoral student at The Ohio State University. Her research interests include early speech development in children with cleft/craniofacial disorders and speech disorders in bilingual children.

Financial Disclosures:

• Employee of Nationwide Children's Hospital 
• Funding from the NIH as a research associate
• Financial compensation from ASHA for this presentation

Nonfinancial Disclosures:

• None

Scott Dailey, PhD (he/him/his) received a BS in psychology from Iowa State University, MA in communication disorders from University of Northern Iowa, and PhD in speech and hearing science from the University of Iowa. He is the director of the Speech & Swallowing Service at the University of Iowa Hospitals & Clinics and is an adjunct assistant professor in the Department of Communication Sciences and Disorders at University of Iowa.

Financial Disclosures:

• Financial compensation from ASHA for this presentation

Nonfinancial Disclosures:

• Treasurer of the American Cleft Palate Craniofacial Association

Deirdre Galvin-McLaughlin, MS, CCC-SLP (she/her/hers) is an ASHA-certified speech-language pathologist with clinical expertise in augmentative and alternative communication. She currently is a speech-language pathologist in the Jay S Fishman ALS Augmentative Communication Program. She also is an adjunct clinical supervisor/instructor at Boston University MS Speech-Language Pathology program, where she has launched an infant-toddler AAC program in the Academic Speech-Language and Hearing Center. She previously worked at Oregon Health & Science University in Portland, Oregon, where she had a split role in clinical and research work related to AAC. Clinically, she worked to provide care to children and adults with complex communication needs. She also contributed to research in the REKNEW lab (PI: Melanie Fried-Oken, PhD, CCC-SLP), investigating the effectiveness of novel brain computer interfaces for communication among other RERC on AAC-related research projects. She currently serves as the editor-in-chief of USSAAC Speak Up! blog and as a committee member on the Communication Matrix Foundation.

Financial Disclosures:

• Receives salary for work at BCH and Boston University
• Financial compensation from ASHA for this presentation

Nonfinancial Disclosures:

• Communication Matrix Foundation executive board member

Lynn Marty Grames, MA, CCC-SLP, is newly retired as diagnostician and therapist with the Cleft Palate and Craniofacial Institute at St. Louis Children’s Hospital after 40 years and currently as adjunct faculty at Saint Louis University. Clinical and research interests include treatment of articulation disorder related to cleft palate and velopharyngeal dysfunction, velopharyngeal imaging, and collaboration with school/community SLPs. She is a member of ASHA SIGs 5 and 19 and the American Cleft Palate and Craniofacial Association.

Financial Disclosures:

• Financial compensation from ASHA for this presentation
• Salary over the course of 40-year association with the Cleft Palate and Craniofacial Institute at St. Louis Children's Hospital

Nonfinancial Disclosures:

• Member and committee member of American Cleft Palate and Craniofacial Association
• Affiliate and committee member of ASHA SIG 5 (Craniofacial and Velopharyngeal Disorders)
• Peer reviewer for the Cleft Palate and Craniofacial Journal

Kathleen A. Kapp-Simon, PhD (she/her/hers) is a licensed clinical psychologist, a visiting research scientist at Shriners Children's Chicago, and visiting associate professor in the Department of Surgery at the University of Illinois at Chicago. She has been involved in clinical assessment and research on the psychological and emotional aspects of cleft and craniofacial birth defects since 1976 and has been a site principal investigator in five NIDCR multi-center research studies. Dr. Kapp-Simon has been involved in the development of position papers and parameters of care for treatment of cleft lip and palate, craniosynostosis, and other craniofacial conditions. She has authored multiple peer-reviewed papers on factors related to psychological adjustment and neuropsychological development of children with cleft and other craniofacial conditions. She has been an associate editor of the Cleft-Craniofacial Journal, served often as a peer reviewer for research articles, and served as a peer reviewer for NIH. She is a past president of the American Cleft Palate-Craniofacial Association.

Financial Disclosures:

• Financial compensation from ASHA for this presentation

Nonfinancial Disclosures:

• None

Erica Klauber, MBA (she/her/hers) has served Children's Craniofacial Association in the past as a Board member and volunteer, and has been in her current role as Executive Director since 2015. As a person with a facial difference herself, Erica's passion to support children, parents, siblings, medical providers, and the public in understanding craniofacial differences has never been stronger. Reflecting most recently on the role of medical stress and trauma in our population and how to increase representation and diversity of the craniofacial community, Erica continues to seek new ways to broaden the circle of acceptance for people with physical differences by educating the public, collaborating with like organizations, and lifting a variety of voices to the public forum. Erica and her husband, Eric, live in Royal Oak, Michigan, with their 2-year-old daughter, Merit. Their favorite thing to do on the weekends is to go on family hikes.

Financial Disclosures:

• None

Nonfinancial Disclosures:

• None

Adam Levy, CAE (he/him/his) is the Executive Director of the American Cleft Palate Craniofacial Association. An experienced association executive and career nonprofit professional, Adam previously served as the Deputy and Interim Executive Director of the American College of Osteopathic Emergency Physicians and held roles at several other national nonprofits and associations. He serves on the Board of Directors of Association Executives of North Carolina and on the Small Staff Associations Advisory Committee of the American Society of Association Executives (ASAE). Adam was a recipient of Association Forum’s Forty Under 40 award in 2022 and holds his Certified Association Executive (CAE) from ASAE. Adam is passionate about health care access and equity in addition to mentorship and leadership. He holds a bachelor’s degree in English Education from Indiana University and completed the Strategic Leadership Program at Northwestern University. 

Financial Disclosures:

• None

Nonfinancial Disclosures:

• None

Angela T. Morgan, BspPath (Aud Hons), PhD (she/her/hers) is head of Speech and Language at the Murdoch Children’s Research Institute. She is a National Health and Medical Research Council Dame Elisabeth Blackburn Fellow and also a Kate Campbell Professorial Fellow at the University of Melbourne. She leads the NHMRC-funded Translational Centre for Child Speech Disorders. Angela’s team focuses on understanding the etiology of childhood speech disorder. Her team has identified over 25 genes causative for childhood apraxia of speech. Angela is also director of the Speech Genomics Clinic at the Royal Children’s Hospital in Melbourne. This clinic is a first of its kind internationally, delivering genetic diagnoses for speech disorder directly to families.

Financial Disclosures:

• Financial compensation from ASHA for this presentation

Nonfinancial Disclosures:

• None

Eileen Nordmeyer, MA, CCC-SLP (she/her/hers) has enjoyed working with children, families, and adults as a speech-language pathologist for 28 years. Over the course of her career, Eileen has worked in a variety of settings and gained experience with individuals of all ages. Currently, Eileen also provides services as an executive function coach. Eileen has the unique experience of understanding what it is like to provide services to others as a professional, while also implementing strategies in her own home. As a parent of a child with 22q11.2 deletion syndrome, she knows how important it is for families to find workable solutions that fit their lifestyle, and she uses her expertise and collaborative approach to promote success and create desired change. Knowing the challenges that individuals may face has given Eileen valuable insight and allowed her to work as a strong advocate for children and families. She has created, led, and participated in numerous private and school-affiliated educational and support programs. In her spare time, you can find her volunteering, cheering on the White Sox, reading a good book, or spending time with her family.

Financial Disclosures:

• Financial compensation from ASHA for this presentation

Nonfinancial Disclosures:

• None

Emily D. Quinn, PhD, CCC-SLP (she/her/hers) is passionate about improving augmentative and alternative communication (AAC) interventions for children. She is an assistant professor in the Department of Pediatrics at Oregon Health & Science University. Her clinical and research expertise center on early language interventions for children with intellectual and developmental disabilities and AAC.

Financial Disclosures:

• OHSU employee
• Grant funding from NIH, IES, K12, and ASHFoundation
• Financial compensation from ASHA for this presentation

Nonfinancial Disclosures:

• Communication Matrix Foundation executive board member

Howard Saal, MD, is a clinical geneticist and pediatrician. He has been in practice for almost 40 years and is currently the Director of Clinical Genetics at Cincinnati Children's Hospital Medical Center and Professor of Pediatrics at the University of Cincinnati College of Medicine. Dr. Saal's career has focused on diagnosis, treatment, and understanding the natural history of children with congenital anomalies, including cleft lip, cleft palate, and other craniofacial anomalies as well as individuals with skeletal disorders. He is the director of the Cleft and Craniofacial Center and the Skeletal Dysplasia Clinic at Cincinnati Children's Hospital Medical Center and is a member of the tri-disciplinary Velopharyngeal Dysfunction Clinic. Dr. Saal has been active in and chaired several committees of the American Cleft Palate-Craniofacial Association and is a past-president of the ACPA. He has authored or co-authored over 150 journal articles and book chapters.

Financial Disclosures:

• None

Nonfinancial Disclosures:

• None

Ruth Stoeckel, PhD, CCC-SLP (she/her/hers) is a Mayo Clinic emeritus SLP. She has worked as a clinician and independent consultant in schools, private practice, private rehabilitation agencies, and clinics. Dr. Stoeckel is on the Professional Advisory Council of Apraxia Kids. She has presented nationally and internationally on motor speech disorders and related developmental issues and contributed to scholarly articles on the topic of childhood motor speech disorders.

Financial Disclosures:

• Financial compensation from ASHA for this and previous presentations
• MedBridge revenue share
• Apraxia Kids travel reimbursement

Nonfinancial Disclosures:

• Apraxia Kids Professional Advisory Council

Tiina Urv, PhD, (she/her/hers) is the program director for the Rare Diseases Clinical Research Network (RDCRN), a multidisciplinary program in the Division of Rare Diseases Research Innovation. Tiina collaborates with 10 NIH institutes to manage 20 consortia and a central Data Management Coordinating Center. The RDCRN has more than 200 participating sites in 12 countries and more than 100 Patient Advocacy Groups as research partners, and conducts research on about 200 rare diseases. Tiina came to the NIH in October 2006, working as a program director at NICHD in the Intellectual and Developmental Disabilities Branch. Prior to joining NIH, she was an assistant professor at the University of Massachusetts Medical School’s Eunice Kennedy Shriver Center and a research scientist at the New York State Institute for Basic Research in Developmental Disabilities. At NICHD, Tiina coordinated the Hunter Kelly Newborn Screening Research Program and managed a diverse portfolio of basic, behavioral, and bio-behavioral research. Tiina earned her PhD from Columbia University and her undergraduate degree from the University of Washington. Prior to coming to NIH, Tiina worked with children experiencing a variety of intellectual and developmental disabilities (IDD), including children with severe behavioral issues, deaf-blindness, and other forms of IDD.

Financial Disclosures:

• None

Nonfinancial Disclosures:

• Parent of a young adult who has Rett syndrome