2022 SATB2-Associated Syndrome Family & Medical Conference Agenda
For those of you attending in-person, as well as digital via Zoom, thank you and welcome to the SATb2-Associated Syndrome Family and Medical Conference! Join us for the largest gathering of SAS families and clinicians in the world! Over the course of two days, attendees will be immersed in learning from experts in the fields of financial planning, IEPs, adult living options, AAC, apraxia, and more. In addition, each afternoon we will host important scientific and clinical presentations from members of the Medical and Scientific Advisory Board and Clinicians from the SAS multidisciplinary clinic at Arkansas Children’s Hospital. Below you will find the full agenda, including day, time, location and speaker information for all of the sessions this week.
Thursday, July 14, 2022
Kick Off Session
Location: Citrus Ballroom
Speaker: Allison Kaczenski, SATB2 Gene Foundation
Join us for a kickoff of our 2-day conference to learn what to expect, what the SATB2 Gene Foundation is working on, and more! Hear from members of the Board of Directors and other families, and get ready for a life-changing two days of connecting with other SAS families and experts! We will go live starting at 9:00 AM for virtual attendees. Our in-person attendees will have time for breakfast and social.
Seven Simple Strategies for Sibling Support
Location: Citrus Ballroom
Speaker: Emily Holl, Sibling Support Project
Siblings of children with disabilities play important roles in their families and often experience similar concerns and opportunities as parents. This interactive session will present some common issues that siblings experience and share seven simple ways that parents and providers can help minimize sibling concerns and maximize opportunities to build close bonds with siblings.
Successfully Navigating the IEP Process
Location: Siesta Ballroom
Speaker: Amy Van Lew, Believing In All Children
Participants will be introduced to the Individualized Education Plan (IEP) process and will acquire knowledge related to all aspects of this process within the US school system. Didactic instruction will be used along with using a case study to facilitate this learning. Specific attention will be on how to collaborate towards positive outcomes from IEP meetings and ultimately effective IEPs.
The ABC’s of Guardian Advocacy and Special Needs Trusts
Location: Citrus Ballroom
Speaker: Sarah S. AuMiller, The Law Offices of Hoyt & Bryan
The ABC’s of Guardian Advocacy and Special Needs Trusts presented by Attorney Sarah AuMiller of The Law Offices of Hoyt & Bryan.
Roundtable Discussions: Topics TBD
Location: Siesta Ballroom
Speaker: TBD
Non-Virtual Session
Bone Health Updates
Location: Citrus Ballroom
Speakers: Katie Bosanki (left) and Yuri Zarate (right), Arkansas Children’s Hospital
In this session, we will start by reviewing current guidelines for bone health for individuals with SAS, followed by a review of the most recent literature. Findings from Dr. Yuri Zarate and Katie Bosanko, Genetic Counselor, will be presented based on their own experience in the SAS multidisciplinary clinic at Arkansas Children’s Hospital to better define future recommendations.
Updated Speech, Language, & Feeding: Findings Among Children with SATB2-Associated Syndrome
Location: Citrus Ballroom
Speaker: Ashlen Thomason, Ph.D, CCC-SLP, Speech-Language Pathologist, Arkansas Children’s Hospital
Individuals with SAS are typically impacted across feeding, speech, intelligibility, receptive language, and expressive language, and a significant portion also have issues with resonance and social language abilities. Initial research yielded information gleaned from short clinic visits with speech-language pathologists at the Arkansas Children’s Hospital SAS Clinic. This clinic model has been expanded to include longer visits with more thorough testing. In this presentation, updated information regarding the speech, language, and feeding findings of children with SAS will be discussed.
Growth in SATB2-Associated Syndrome, the SAS-Severity Score, and Registry Updates
Location: Citrus Ballroom
Speaker: Yuri Zarate, Arkansas Children’s Hospital
Growth in SATB2-Associated Syndrome and the SAS-Severity Score. Data will be presented from two recent projects. First, we describe a large dataset with growth calculations and growth charts in SAS. Next, we will present a newly developed tool to assess the severity of SAS in a given individual. We hope this new method will help to determine clinical severity and help us understand the reasons for these differences. In addition, hear updates from the clinical registry.
Friday, July 15, 2022
Updates from the SATB2 Gene Foundation
Location: Citrus Ballroom
Speaker: Allison Kaczenski, SATB2 Gene Foundation
Join us to hear more updates from the SATB2 Gene Foundation and what programs are coming next. Learn how to get more involved – we need each of you!
My Child Has Something to Say (Building a Team to Support My Child’s Communication)
Location: Citrus Ballroom
Speaker: Amy K. Thomas, University of Central Florida
The purpose of this presentation is to define and discuss childhood apraxia of speech (CAS), including a brief overview of the symptoms and treatment methods used by speech-language pathologists. The discussion will also incorporate strategies for identifying and working collaboratively with speech-language pathologists experienced with motor speech disorders.
AAC 101
Location: Citrus Ballroom
Speaker: Carolyn Buchanan, University of Central Florida/Florida Alliance for Assistive Services and Technology (FAAST)
Augmentative and alternative communication (AAC) systems are comprised of many different modalities, including those that do and do not require technology. This presentation will introduce the role of AAC in communication, examples of AAC systems, and a brief overview of the providers and funding options available to AAC users.
Adult Living Options
Location: Siesta Ballroom
Speaker: Stephanie Watkins, Watkins LLC
We will discuss the challenges to adult housing; finding affordable housing and staffing. We will discuss the different housing options that currently exist as well as the steps it takes to make sure an individual can qualify for the supports needed to make housing a reality. We will offer handouts so that individuals can find the resources in individual states to make this happen. We will share some sample innovative models across the country and personal testimonies of folks that are successfully living in the community.
Moving on with AAC implementation: Using AAC Generative Language Intervention (AAC-GLI) to Produce Multi-Symbol Utterances
Location: Citrus Ballroom
Speaker: Nancy Harrington, University of Central Florida
Children with unintelligible speech may benefit from using graphic symbol augmentative and alternative (AAC) options, using photographs or line drawings to communicate. Children can learn to use graphic symbols to construct multi-symbol utterances and early sentences with appropriate word order to convey novel messages. The ability to produce generative language has the potential to enable children with complex communication needs to actively participate in education, socialization and ultimately employment. This session will focus on AAC Generative Language Intervention (AAC-GLI), a play based treatment approach to teach children to produce multi-symbol utterances using an AAC iPad application. Opportunities for hands on practice will be offered.
Roundtable Discussions: Topics TBD
Location: Siesta Ballroom
Speaker: TBD
Non-Virtual Session
Experimental Models of SATB2-Associated Syndrome
Location: Citrus Ballroom
Speaker: Jennifer Fish, University of Massachusetts Lowell
Come back for a full description. Updates will be provided on iPSCs and mouse models.
Dental Aspects of SATB2-Associated Syndrome
Location: Citrus Ballroom
Speaker: Kirt Simmons, University of Arkansas for Medical Sciences
The unique dental characteristics of SATB2-Associated Syndrome will be presented from findings from the SAS Multidisciplinary clinic at Arkansas Children’s Hospital. How these dental issues can be potentially addressed will also be discussed.
Behavioral Management and Black Belt Parenting: Cultivating Skills for Success
Location: Citrus Ballroom
Speaker: Allison Cotton, University of Nevada, Reno
Parenting is incredibly challenging. Effectively parenting a neurodiverse or special needs child requires a skill set that must be practiced over time. During this session, we will walk through a parenting model for setting you and your child up for success. We will also review parenting techniques for specific behavioral challenges, what medication can and cannot do, and how to approach these conversations with your child’s physician and therapists.
SATB2 Portal Demo
Location: Citrus Ballroom
Speaker: Yuri Zarate, Arkansas Children’s Hospital
We will feature the new SATB2 portal live as a more interactive way to learn about the meaning of the different genetic changes in the SATB2 gene. In addition, hear updates on upcoming research efforts.
Speakers
Allison Kaczenski
President
SATB2 Gene Foundation
Emily Holl
Director
Sibling Support Project
Sarah S. AuMiller
Attorney
The Law Offices of Hoyt & Bryan
Ashlen Thomason
Ph.D, CCC-SLP
Arkansas Children’s Hospital
Katie Bosanko
Genetic Counselor
Arkansas Children’s Hospital
Yuri Zarate
Associate Professor; Pediatrics/Genetics
Arkansas Children’s Hospital
Amy K. Thomas
M.A., CCC-SLP, ATP
University of Central Florida
Carolyn Buchanan
M.A., CCC-SLP, ATP, CBIS
University of Central Florida
Kirt Simmons
Chairman & Professor, Department of Pediatric and Special Needs
University of Arkansas for Medical Sciences
Jennifer Fish
Associate Professor, Biological Sciences
University of Massachusetts Lowell
Allison Cotton
Assistant Professor of Psychiatry
University of Nevada, Reno
Amy Van Lew
Non-Attorney Special Education Parent Advocate
Believing In All Children
Stephanie Watkins
Support Broker
Watkins LLC
Nancy Harrington
Associate Clinical Instructor, AAC Lab Research Grant Coordinator, SLP
University of Central Florida
