2025 SSSA Conference Schedule
FRIDAY, JULY 11, 2025
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 12, 2025
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: A Multidisciplinary Approach to Sotos Syndrome
8:30 am to 9:30 am
Jennifer M. Kalish, MD, PhD
This presentation will share with our families the clinical approach to rare disease care focusing on the diagnosis and management of Sotos Syndrome. Dr. Kalish is a pediatric geneticist at Children’s Hospital of Philadelphia and leads its overgrowth clinic and research program. The Children’s Hospital of Philadelphia is one of the leading pediatric hospitals and research facilities in the world. Dr. Kalish’s clear explanations of complex problems help parents make informed decisions about their children’s care. Dr. Kalish received her BA (Chemistry and Physics) from Harvard University, a PhD (Genetics) and MD from Yale University, and an MTR (Masters in Translational Research) from the University of Pennsylvania.
Concurrent Breakout Sessions from 9:50 am to 5:00 pm
We Have a Diagnosis. Now What?
Dr. Brad Schaefer, University of Arkansas for Medical Sciences
This session will be a virtual, live presentation to provide an overview of Sotos Syndrome and next steps after receiving a diagnosis.
Sotos Syndrome: A Genetic Condition with Epigenetic Consequences
Jill Fahrner, MD, PhD, The Johns Hopkins University School of Medicine
Dr. Fahrner will review what is currently known about the molecular changes in Sotos syndrome and how it is thought that various genetic alterations lead to genome-wide epigenetic consequences and mention ongoing research efforts for Sotos Syndrome.
Adult Features of Sotos Syndrome
Dr. Alison Foster, Birmingham Children’s Hospital, UK
This presentation focuses on the adult features and manifestations of Sotos Syndrome.
Speech and Language Characteristics in Individuals with Sotos
Lauren West, MS CCC-SLP
This session will focus on navigating the complexities of communication for individuals with Sotos.
Neurodevelopmental Manifestations of Sotos Syndrome
Dr. Jacqueline Harris, Epigenetics Clinic at Kennedy Krieger Institute
Dr. Harris will provide an overview of neurologic, cognitive, and behavioral issues commonly seen in children and adults with Sotos Syndrome. This session will provide some information for both diagnosis and management of these comorbidities.
A Sensory-Based Approach to Sotos Syndrome
Regina Wilson, MS OTR/L, St. Christopher’s Hospital for Children
Sensory-based support and strategies can be beneficial in promoting independence for individuals with Sotos syndrome. Research shows that children with Sotos syndrome may interpret sensory information received from their body or environment differently. Through an occupational therapy lens, this session will help you gain confidence in your ability to identify sensory processing differences, understand how they can affect your child’s participation in daily activities, and determine effective ways to foster continued growth and independence.
Identifying Sotos Syndrome Before Your Baby is Born
This talk will focus on the prenatal ultrasound findings, screening tools, and diagnostic tools for the detection of Sotos syndrome. With these goals in mind, we will review the basic concepts, benefits, and limitations of ultrasound and prenatal genetic testing. Lastly, we will discuss options for testing embryos for Sotos syndrome through preimplantation genetic testing, or PGT.
Speech-Language Disorders in Sotos Syndrome: Best Practices for Diagnosis and Management
Makaela Somma, MS CCC-SLP, Children’s Hospital of Philadelphia
People with Sotos Syndrome frequently experience speech and/or language disorders, including expressive language impairments, articulation disorders, voice disorders, etc.; all of which make communication challenging for individuals with this condition. The goal of this presentation will be to summarize current clinical and scientific knowledge regarding Sotos syndrome for speech-language pathologists and additional service providers, and to provide recommendations for clinical management (assistive technology, caregiver training, articulation hierarchy, etc).
The IEP Evaluation/Reevaluation Process
Diane Perry, PEAL Center
This session will discuss what an IEP is and its purpose. Its essential legal rights and protections, team members, the role of each team member, and the importance of collaboration. The presenter will also outline the steps in development, eligibility, and implementation. She will also detail the components of an IEP, monitoring and review, and how progress is measured. Lastly, she will address the special needs of Sotos children, share various resources and support, and how parents can actively participate.
Championing for Your Child: Empowering Your Child’s Journey
Melissa Godesky
An interactive presentation led by a mother of a 16-year-old Sotos son. Some parents may just be starting, or some have already traveled down that path. Do they look back now and say they wish they then what they know now? Sharing your journey in support of your child may help another parent or loved one. The presenter will discuss lessons learned, being a role model, various medical, educational, and social issues. Eating healthy, new foods, exercise, sports, favorite subjects and all of the wins along the way. Your child will see you happy and see you thriving.
Standing Tall for Sotos
Mandy Nagy, MD Neurologist, and Leah Wibecam, MD, Neurologist, Mass General; Jayme Betts and Kim Little, Sotos Parents
The Vision. The presenters will share their efforts in creating centralized care for patients and access to a wide range of specialists working together to evaluate and treat. The need to simplify the complexities Sotos families face after diagnosis and create a care guide resource for newly diagnosed families.
International Focus on the Clinical Aspects and Diagnosis of Sotos Syndrome
Domenico Coviello, MD, PhD, Director of Laboratory of Human Genetics, IRCCS Istituto Giannina Gaslini Research Institute and Children Hospital, Genoa Italy
In Italy, ASSI Gulliver plays an active role in supporting eight different projects, ranging from laboratory research aimed at developing innovative therapies to initiatives addressing the medical needs of affected children.
SUNDAY, JULY 13, 2025
7:30 am to 8:45 am
Family Breakfast
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
