PRISMS Webinar series is brought to you by the PRISMS Education Committee. The goal of the Education Committee is to establish new platforms which bring educational information and resources about Smith-Magenis Syndrome to the community at large, (via social media, technology, and other), in a more dynamic way, and encourage/activate engagement between families and professionals.
Upcoming Webinars
Building Bridges and Navigating Adult-based Healthcare for Individuals with Developmental Disabilities
Date: December 9, 2024 at 7:45 PM EST
Description: There are numerous challenges that make the transition from pediatric to adult-based healthcare difficult, particularly for individuals with intellectual and developmental disabilities. This webinar will review some of these barriers, discuss the lessons learned and experience of an adult primary care clinic caring for this population, and review a framework that individuals and families can use to navigate the complex healthcare system.
Presented By: Dr. John Berens, MD, Assistant Professor, Center for Transition Medicine, Department of Medicine, Baylor College of Medicine (BCM).
Past Webinars
Government Benefits 101 – Understanding SSI and Medicaid, SSDI and Medicare as well as Childhood Disability Benefits
Date Presented: October 8, 2024
Description: This webinar discusses SSI & Medicaid, SSDI & Medicare, and Childhood Disability Benefits as well as when and how to apply, how to be prepared for your appointment, and how to maintain eligibility going forward. You will learn how to maximize benefits for your family. Many of our children with disabilities do not qualify for SSI & Medicaid as minors. The landscape changes when they turn 18. Whether you are already getting benefits and aren’t sure if your benefits are maximized or you need guidance on how to get started, this session is for you.
Presented By: Allison Schaberg, Owner and Managing Partner of Consolidated Planning Group (CPG), a holistic financial planning
firm specializing in advisory and consulting services for Special Needs families. CPG is domiciled in Texas and serves clients throughout the U.S.
A Day in the Life of the SMS Clinics
Date Presented: July 12, 2023
Description: The PCRC provides multi-specialty, comprehensive and compassionate care for patients with SMS. The clinics provide families an opportunity to receive medical and clinical care and/or treatment recommendations that they can carry home to their local providers of care and that address the challenges and health concerns associated with SMS.
This webinar will provides “A Day in the Life” look at how one clinic operates and approaches patient care and consultations with treatment specialists and how they develop a plan of care for each patient.
Presented By: Barbara Haas-Givler, MEd, BCBA, Director of Education and Behavioral Outreach at Geisinger’s Autism and Developmental Medicine Institute and Madeline Williamson, MS, CGC, Clinic Coordinator at Geisinger’s Autism and Developmental Medicine Institute
Adult Living – Residential and Vocational Options
Date Presented: May 24, 2023
Description: This webinar explores and introduces a variety of non-traditional housing options, vocational training, employment, social, therapeutic, and recreational resources. Viewers learn how person-centered self-directed planning, which addresses every aspect of an individual’s life (social connections, a sense of purpose and contribution, nutrition, environment, joy, etc.) will lead to a desirable quality of “life like any other” for individuals who may experience complex challenges.
Presented By: Daniela Morse, M.Ed., is the founder and Executive Director of the Shared Living Collaborative, a unique and innovative Human Service agency, supporting youth and adults with complex challenges in community-integrated settings.
Treatment for Nighttime Sleep Disturbances in SMS
Date Presented: May 2, 2023
Description: Representatives from Vanda Pharmaceuticals spoke about a treatment for Nighttime Sleep Disturbances in SMS, including an overview of the treatment prescribing information and resources available to families.
Presented By: Vanda Pharmaceuticals
Self-Regulation – Our Greatest Parenting Tool
Date Presented: May 5, 2022
Description: As a parent, our greatest and most effective tool is our ability to remain regulated during challenging experiences and provide our children with the co-regulation they need from us. When we have the ability to regulate our own emotional state, it then allows us to co-regulate with our child, helping them find calm and equilibrium when they are experiencing their own big emotions. Contrary to what many think, this is not simply a psychological or emotional process underway, but is one that resides deep within our nervous system and our child’s nervous system. In this webinar, we will talk about what is meant by self-regulation and co-regulation and why it is important for us to be cognizant of these two elements as parents. We will talk about how this might look different when parenting a child with significant neurobehavioral challenges and strategies for increasing our ability to stay regulated when our child is in the midst of incredibly challenging behaviors. No matter how little or how much we know about this topic, there is always room to grow in our understanding of ourselves from this nervous system lens.
Presented by Eileen Devine, LCSW
Creating a Special Needs Legal and Life Care Plan
Date Presented: Dec 8, 2020
Description: Creating a future that provides for both your own financial needs and those of a dependent with special needs can feel overwhelming. This workshop will discuss four focus areas that should be considered with integrated planning, and a recommended timeline to avoid any disruption in the care of a loved one with special needs.
Presented by Kelly Piacenti, MA, ChSNC®, Head of SpecialCare, MassMutual and Jerry L. Hulick, CLU, ChFC, ChSNC, CLTC, General Agent Emeritus, MassMutual Financial Group
10 Basic Financial Steps for Special Needs Caregivers
Date Presented: Nov 10, 2020
Description: This workshop discusses 10 basic steps to help caregivers get started in preparing for the financial future of their dependent with special needs. As a caregiver of a dependent with special needs the single most important issue on your mind, regardless of the age of the dependent, is what will happen to my dependent after I’m gone. There are some needs that will always be present and they must be carefully considered and planned for appropriately. This workshop addresses such critical issues as applying for government benefits for Social Security and Medicaid, creating a Special Needs Trust, the importance of a Will and considering a Letter of Intent. Taking these 10 basic steps now can help ensure the type of care and quality of life for a loved one’s well-being today and tomorrow.
Presented by Kelly Piacenti, MA, ChSNC®, Head of SpecialCare, MassMutual and Jerry L. Hulick, CLU, ChFC, ChSNC, CLTC, General Agent Emeritus, MassMutual Financial Group
Strategies to Increase Self-Engagement and Independent Play for Children with SMS
Date Presented: Sep 9, 2020
Description: Many children with SMS enjoy socializing and playing with peers and adults, but may have difficulty self-occupying for periods of time. This can become challenging for parents and caregivers as they try to balance home obligations, work duties, and caring for other family members. Learn some simple strategies and high-interest activities that promote more independent play and leisure skills, skills that can develop further over time and maturation.
Presented by Anissa Moore, M.Ed., BCBA, LBA. Anissa is an independent educational consultant and licensed, Board Certified Behavior Analyst (BCBA / LBA) specializing in the field of ADHD, autism spectrum disorders, emotional disturbance, oppositional defiance disorder, and other challenging behavior disorders.
Supporting Your Child with SMS in Special Times
Date Presented: Mar 30, 2020
Description: In this special webinar with Barbara Haas-Givler, MEd, BCBA, caregivers can learn about strategies to support yourselves and your individuals with SMS during this difficult time with COVID-19, or any other difficult time.
Special Education – Never too Soon to Plan for Next Year!
Date Presented: Mar 24, 2020
Description: In this session with Sylvia Farber, participants will learn key education ideas so that planning for summer and the next school year can be more successful!
Food Seeking Behavior Management
Date Presented: Feb 2, 2020
Description: Dr. Amy McTighe, Director of Care Coordination at The Children’s Institute in Pittsburgh, presents on the management of food seeking behavior.
The History of Smith Magenis Syndrome with Ann C. M. Smith, M.A., DSc (Hon)
Date Presented: Jan 22, 2020
Description: Ann C. M. Smith, M.A., DSc (Hon), discusses the history of Smith-Magenis Syndrome and the importance of what we have learned through research. Ann is a founding member of PRISMS and chaired the Professional Advisory Board (PAB) until 2011. She now serves as PAB Emeritus Chair, and has dedicated over 3 decades of her professional career to the study of SMS, the syndrome she co-discovered in early 1980’s.
Understanding the Genetics of Smith-Magenis Syndrome
Date Presented: Aug 6, 2019
Description: Rachel Franciskovich, MS, CGC, PRISMS Genetic Counselor, discusses the genetics behind Smith-Magenis Syndrome. Rachel is a genetic counselor in the department of Molecular and Human Genetics at Baylor College of Medicine and offers support to the SMS community.
SMS Patient Registry Webinar
Date Presented: Jun 22, 2019
Description: Theresa Wilson from the SMS Patient Registry presents information on what the SMS Patient Registry is, how the information provided is used, and how families can enroll using the new electronic consent form!