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.

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Sessions

Zoom Event Access

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

silhouette of children's running on hill

Amy Van Lew
Non-Attorney Special Education Parent Advocate
Believing In All Children

silhouette photo of six persons on top of mountain

Stephanie Watkins
Support Broker
Watkins LLC

shallow focus photo of scrabble pieces

Nancy Harrington
Associate Clinical Instructor, AAC Lab Research Grant Coordinator, SLP
University of Central Florida

Thank You Sponsors!

PEC+ Planners & Engineers Collaborative+

Allison & Matt Kaczenski