2026 SSSA Conference Schedule
FRIDAY, JULY 10, 2026
9:00 am to 12:30 pm
SSSA Board Meeting
1:00 pm to 5:00 pm
Registration Opens
1:00 pm to 5:00 pm
Doctor Appointments (four concurrent, rooms vary)
5:00 pm to 6:00 pm
Welcome Reception
6:00 pm to 10:00 pm
Family Dinner, Silent Auction, Networking Activities, Dancing/DJ, Photo Booth
SATURDAY, JULY 11, 2026
8:00 am to 5:00 pm
Childcare (rooms vary)
Ages 0 to 3, 4 to 7, 8 to 11, and 12 to 17
8:00 am to 5:00 pm
Adult Sotos Track (various topics)
Conference Program
Keynote Session:
8:30 am to 9:30 am: Coral Ballroom A/B/C/D
When Connection Leads the Way: Expectations Through a TBRI® Lens
Joy and Stephen Zedler, The Pearl Project
This keynote explores how Trust-Based Relational Intervention® (TBRI®) helps families hold healthy expectations while leading with connection. Guided by the TBRI® principles of Empowering, Connecting, and Correcting, two speakers will share practical, trauma-informed strategies for creating structure that supports regulation, setting expectations that foster growth, and responding to behavior in ways that strengthen trust rather than strain it. Designed for families raising children with special needs, this session offers hope, clarity, and tools for navigating daily challenges with compassion and confidence
9:50 am – 10:50 am: Coral Ballroom A/B
We Have a Diagnosis. Now What? (Virtual Presentation)
Dr. Brad Schaefer, University of Arkansas for Medical Sciences
Dr. Schaefer achieved board certification in Pediatrics, Human Genetics, and Pediatric Endocrinology. He is a founding fellow of the American College of Medical Genetics, and a fellow of the American Academy of Pediatrics. He is a member of the American Pediatric Society. He has authored more than 250 scientific articles, book chapters, and invited reviews.
9:50 am – 10:50 am: Coral Ballroom C/D
Neurodevelopmental Manifestations of Sotos Syndrome
Dr. Jacqueline Harris, Director of the Epigenetics Clinic at Kennedy Krieger Institute
Dr. Harris is interested in genetic and epigenetic causes of neurodevelopmental disorders – particularly intellectual disability – and how specific genetic and epigenetic changes lead to specific neuroanatomic, neurophysiologic and cognitive phenotypes. She is also interested in developing specific cognitive profiles in genetic syndromes as potential outcome measures for trials and to help localize deficits. Most of her research is currently centered around Kabuki syndrome.
11:00 am – 12:00pm: Coral Ballroom A/B
Sotos Syndrome: A Genetic Condition with Epigenetic Consequences
Dr. Jill Fahrner, Director, Epigenetics and Chromatin Clinic, Johns Hopkins University School of Medicine
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. She earned her Ph.D. from Johns Hopkins University and her M.D. from the University of North Carolina. She completed pediatrics residency training at Duke University Medical Center.
11:00 am – 12:00 pm: Coral Ballroom C/D
Adult Features of Sotos Syndrome
Dr. Alison Foster, Geneticist, Birmingham Children’s Hospital, UK
This presentation focuses on the adult features and manifestations of Sotos Syndrome. Dr. Foster received her undergraduate degree in Human Genetics from University College London in 2003. She went on to study medicine at the University of Newcastle upon Tyne and trained in Pediatrics and Clinical Genetics in the West Midlands in the UK.
12:00 pm – 1:00 pm: Lunch on Your Own
1:00 pm – 1:50 pm: Coral Ballroom A/B
Speech, Language, and Communications in Sotos Syndrome (Virtual Presentation)
Lauren West, MS CCC-SLP
This session will focus on navigating the complexities of communication for individuals with Sotos. 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.
1:00 pm – 1:50 pm: Coral Ballroom C/D
Roadmaps and Caremaps: A Journey of Connections, Networks, and Transitions from Diagnosis to Adulthood
Linda Starnes, Florida Department of Health Children’s Medical Services and Specialty Programs
We all have different journeys, yet many common needs for helpful connections, the support of networks, and the navigation of transition points as families with a loved one with Sotos Syndrome. 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. Learn tips, tools, resources, and recommendations from a seasoned parent on traveling the journey to adulthood.
2:00 pm – 2:50 pm: Coral Ballroom A/B
From Vision to Clinic: Building the First Multidisciplinary Sotos Syndrome Clinic at Mass General Brigham
Jayme Betts, Dr. Mandy Nagy and Dr. Leah Wibecan, Mass General/Harvard Medical School
This session will explore how parent-led advocacy and strategic philanthropy have driven measurable progress toward opening a first-of-its-kind Sotos Syndrome Clinic at Mass General Brigham. Through the Standing Tall for Sotos initiative, families and supporters have raised over $400,000 to support multidisciplinary care, research coordination, and family-centered services. Presenters will outline the clinic’s evolving structure, results of a Sotos community survey, recent staffing milestones, ongoing recruitment efforts, and plans for an early 2026 soft launch across neurology, genetics, and gastroenterology. Attendees will gain insight into the clinic’s phased launch strategy, early patient engagement efforts, and the operational framework supporting long-term sustainability.
2:00 pm – 2:50 pm: Coral Ballroom C/D
From Parent to Parent: A Panel Discussion Featuring Parents of Sotos Individuals
This interactive breakout session features a parent question-and-answer panel with families representing different ages and life stages of children and young adults with special needs. Panelists will respond to the same set of common, real-life questions, offering honest perspectives on how they navigated shared challenges at various points in their journey. Topics may include managing repetitive questioning, late toilet training, bullying, anxiety, major milestones such as learning to drive, and getting a job. Additional questions will be collected through a pre-session survey, and time will be reserved at the end of the session for audience Q&A.
3:00 pm – 3:50 pm: Coral Ballroom A/B
Caring for the Caregiver (Stress & Trauma Focus)
Dr. Melody Parsons
Research suggests that primary caregivers—particularly those supporting individuals with significant developmental, medical, or behavioral needs—often experience chronic stress and trauma responses similar to those seen in combat veterans or survivors of violence. But how do you cope with post-traumatic stress when you are never truly “post” the trauma? More than the familiar advice to “put your own oxygen mask on before assisting others,” this session takes a deeper look at evidence-based strategies that help caregivers recognize risks and protect their own well-being while continuing to support a loved one with complex needs. Participants will explore practical tools to build self-awareness, resilience, and healthier coping practices within the realities of long-term caregiving.
3:00 pm – 3:50 pm: Coral Ballroom C/D
The Brain in Learning 101
Tara Bonner, The Arrowsmith Project
This session helps families understand the role of cognitive function in learning, independence, and daily life, and explores how targeted cognitive approaches may offer meaningful opportunities for individuals with Sotos Syndrome. Participants will learn about the principles of neuroplasticity and how cognitive development can be strengthened over time, with a focus on the Arrowsmith Program as a potential resource. The session also features first-hand insights from a Sotos Syndrome family who completed the program, sharing real-life experiences and the impact it had on their child and family.
4:00 pm – 5:00 pm: Coral Ballroom A/B
Caring for the Caregiver (Advocacy & Systems Navigation Focus)
Dr. Melody Parsons
This session offers practical strategies for navigating the complex systems of medical care, educational planning, and public benefits for individuals with Sotos syndrome. Participants will learn about low-cost, easy-to-use, and accessible technologies that can support effective advocacy. The session will also include a focused discussion on the benefits and limitations of using artificial intelligence (AI) as a tool to strengthen advocacy efforts. Caregivers, support persons, and self-advocates (adults with Sotos syndrome) are encouraged to attend. Ample time will be provided for questions and discussion.
4:00 pm – 5:00 pm: Coral Ballroom C/D
Finding Your Voice: Sharing Your Child’s Diagnosis with Confidence
Melissa Godesky-Rodriguez
For many parents, one of the hardest parts of the journey after a diagnosis is learning how to talk about it. Who do you tell? What do you say? How much should you share? And how do you do it in a way that empowers both you and your child?
In this interactive session, Melissa Godesky-Rodriguez will share her personal experience navigating these conversations as a parent of a child with Sotos Syndrome. She will discuss how she approached sharing medical information with family, schools, and the community, how those conversations evolved over time, and how her child received and understands his diagnosis today.
This session will focus on building confidence, finding language that feels authentic, and creating a supportive space for parents to learn from one another. Through open discussion and shared experiences, parents will leave with practical approaches for communicating about their child’s diagnosis while maintaining empowerment, dignity, and connection.
SUNDAY, JULY 12, 2026
8:00 am to 12:00 pm
Childcare (rooms vary)
Ages 0 to 3, 4 to 7, 8 to 11, and 12 to 17
9:00 am to 10:00 am
Doctors Q&A Panel Discussion
10:00 am to 11:00 am
SSSA Annual Member Meeting
11:00 am to 12:00 pm
Adult Sotos Q&A Panel Discussion
12:00 pm
Educational Program Concludes
1:00 pm to 5:00 pm
Doctor Appointments (four concurrent, rooms vary)
5:00 pm
Conference Concludes
