Pathways Education Series
by Carla D’Imperio, PMSF Director of Family Support.
We are excited to share details about our Pathways Education Series, which will meet monthly throughout 2025. This will be a monthly series of webinars of different topics that have been chosen by our families. Some of these topics are brand new and we have never covered them before. Please note that webinar topics are subject to change. Check back for updates and new sessions!
Please scroll down to register for our next webinar. Further down the page you will find recordings and slides from all previous sessions offered in 2025.
APRIL: Puberty, Menstrual Management, and Women’s Health in Phelan-McDermid Syndrome
Tuesday, April 22nd, 12pm to 1pm ET
Puberty and menstruation can be difficult for individuals with Phelan-McDermid syndrome and present unique challenges for caregivers. This session covers what to expect, how to manage menstrual health, and ways to support overall well-being. We’ll share practical tips on communication, hygiene, and medical options to help make the transition through puberty to adulthood smoother for everyone.
We are excited to offer this topic and we hope you will join us. Please click the link below to register! Please note that this session will be recorded and the recording link will be sent to everyone who registers.
PATHWAYS EDUCATION SERIES SESSION ARCHIVES
JANUARY: How to Talk about Phelan McDermid Syndrome
It can be challenging to explain your child’s diagnosis to different groups of people in different settings. Our families may face uncomfortable questions, awkward comments, and invasive stares when they are out and about in the world. Sometimes we are caught off-guard and we can’t come up with an answer or response in the moment.
Please join us as we explore how to share about Phelan-McDermid syndrome with curious members of the general public, our children’s peers, extended family, and more! We hope you will leave our session with some concrete answers and talking points that you can use out in the community.
FEBRUARY: De-escalation Strategies for Crisis Situations
Individuals with Phelan-McDermid syndrome may exhibit challenging behaviors, which may become more difficult to manage as the child gets older. When handling difficult behaviors with our teenage and adult children with Phelan-McDermid syndrome, there are strategies we can use to help minimize the impact and extent of these behaviors.
During this session, we will learn about de-escalation strategies and how to apply them in challenging situations that can arise in our day-to-day lives with Phelan-McDermid syndrome. This session will be facilitated by Cory Sutton, Law Enforcement Liaison and Phelan-McDermid Syndrome Dad.
MARCH: Medical Advocacy and Strategies
In this session, we’ll explore how to advocate for your child in medical settings. We’ll discuss effective advocacy strategies, help caregivers build confidence in addressing concerns, and talk about what to do when you feel unheard. We’ll also examine the role of bias and privilege in medical interactions and hear from caregivers about their personal experiences.