Speakers

Dr. Shaefer is a professor of Pediatric, Genetics, and Internal Medicine, the University of Arkansas for Medical Sciences.

Dr. Fahrner is an assistant professor in the Departments of Genetic Medicine and Pediatrics at the Johns Hopkins University School of Medicine. Her area of clinical expertise is medical genetics.

Dr. Harris is the director of the Epigenetics Clinic at Kennedy Krieger Institute and an associate professor in pediatrics, neurology and genetics at The Johns Hopkins University School of Medicine.

Dr. Foster is a Consultant in Clinical Genetics at Royal Devon University Hospitals and Honorary Consultant at Birmingham Women’s and Children’s Hospitals.

Lauren is a speech-language pathologist for the Elkhorn Public School District near Omaha, Nebraska. Sher serves students grades Pre-K – 8th grade with a variety of communication needs. Prior to this she served for eight years as an early intervention home-based speech-language pathologist.

Dr. Wibecan received her medical degree from Harvard Medical School and her Masters in
Public Health from the Harvard T.H. Chan School of Public Health. Dr. Wibecan completed
her Pediatric Neurology residency and Epilepsy fellowship at Mass General and is now
faculty at Mass General/Harvard Medical School.

Dr. Nagy received her medical degree from Case Western Reserve University and trained at MGH as a resident in Pediatric Neurology followed by a fellowship in Neurogenetics and Gene Therapy before joining the Mass General/Harvard Medical School faculty.

Jayme Betts shares the reality of raising a child with Sotos syndrome. For years, Jayme and her husband had to teach specialists, coordinate care, and fight a system that wasn’t built for them. But Jayme is changing the record. Instead of waiting for the system to catch up, she is building the future herself.
Jayme has been:
 Co-founding the first Sotos syndrome clinic at Mass General Hospital.
 Creating a global data registry to replace outdated, “scary” Google results with real hope.
 Advocating for accessible changing tables in public spaces.
Jayme’s message was clear: Rare disease families shouldn’t have to be their own doctors, data scientists, and architects. Because of her work, the table is being set for better research, better treatment, and a better life for the Sotos community.

Melissa is the mother to Dantae, her 16-year-old Sotos son. Melissa is a retail and operations leader who thrives on turning challenges into opportunities and ideas into action. In addition to her professional role, she is also an elected board of education trustee at Bayonne NJ High School.

Dr. Parsons has committed her career to help grow the profession of nursing as an educator at every level from Practical Nursing to Graduate Education. She is passionate about using technology to enhance educational access and promote student success. As a Certified Nurse Educator (NLN) she is committed to ongoing continuous quality improvement in curriculum and has a specific interest in faculty development and mentoring.

Linda Starnes raised two children with very different medical complexities and genetic conditions (Sotos Syndrome, and Congenital Bilateral Perisylvian Syndrome), while serving in various capacities with local, state, and national disability, health care, public health, and educational agencies and organizations.

Tara Bonner collaborates with professionals and educators worldwide, envisioning the convergence of learning and neuroscience. Tara has witnessed that cognitive programming can be a transformative force not just for struggling learners, but for all seeking to experience learning with ease and joy. She is honored to be part of these discussions and an organization that’s revolutionizing education by putting
the “Brain in Education”.