Pathways Session Archives
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.
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.
Medical Advocacy & 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.
Puberty, Menstrual Management, and Women’s Health in Phelan-McDermid Syndrome
Join Dr. Lori Levi, MD, an OB/GYN and Phelan-McDermid syndrome mom, to discuss the special care and considerations for females with Phelan-McDermid syndrome. 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.
Handling Denials from Insurance & Medicaid
In this webinar, you will learn how to navigate insurance and Medicaid denials with confidence. This session will covers common reasons for denials, how to file appeals, tips for building strong cases, and next steps after appealing. You’ll leave with practical steps and resources to help secure the services and support your child or adult with Phelan-McDermid syndrome needs.
Diving into State Resources (US-focus)
This webinar is hosted by Ali Niemi, who is a state resource expert and Phelan-McDermid syndrome mom. Ali explores key state resources for individuals with Phelan-McDermid syndrome, including HCBS waivers, SSI, Medicaid, school-based supports, and more. We cover practical steps and provide tools to help families and professionals access the support they need and what support they can expect from their state.
Coping Strategies for Caregivers
Caring for an individual with Phelan-McDermid syndrome is full of challenges. You may feel isolated and “in the trenches”. Join Kiley Richards, LISW, to learn concrete strategies for coping with the challenges of caring for a loved one with this rare diagnosis.
Promoting Overall Health in Phelan-McDermid Syndrome
Learn tips to keep your child or adult healthy as well as strategies to help mitigate some of our population’s high-risk areas. We will look through PMSF’s related resources together, such as our medical advisories and clinical consensus guidelines.
Nutrition and Phelan-McDermid Syndrome
Learn about the basics of good nutrition for individuals with Phelan-McDermid syndrome, including supplements, GI symptoms, and maintaining a healthy weight. This webinar will be facilitated by Chardell Buchanan, MS RDN. Chardell is a Registered Dietitian Nutritionist, a Director on PMSF’s Board of Directors, and mom to Ben, her son who has Phelan-McDermid syndrome.
A Tour of PMSF’s Resources
Join our Director of Family Support to dig into the PMSF’s newest resources and to take a tour of our website. We have so much available to support our families and we want to make sure you know how to find exactly what you need.