By Lauren Schmitt, PhD
Date February 25, 2026
Everyday, our families are taking their loved ones to clinic appointments, research visits, or under the worst circumstances, the emergency room. For individuals with Phelan-McDermid syndrome, clinic and research visits can be extra challenging given sensory sensitivities, limited verbal communication, GI issues, and anxiety around medical procedures. So last month, we got input from you, our PMSF community, to help identify the types of resources that may be helpful for you and your loved one during these clinic or research visits.
You asked. We listened.
We are kicking off our inaugural resource with items to have in your “Go Bag”, or the bag (or bags!) you bring to clinic and research visits. When you’re juggling medications, sensory supports, insurance cards, comfort items, and medical documentation, it’s easy to forget something important. We created this checklist to help take the mental load off of you, so that you have one less thing to think about! Check it out below:
Over the next year, we will continue to release resources to help make clinic and research visits just a little easier. Each of these resources will be available on our website for easy access on your phone or computer as well as a printable 1-pager.
A couple resources to look forward to in the future:
- Tips for successful saliva collection
- What to find out before a research visit
- Tips for a making a blood draw less stressful
- Decision tree for when to seek emergency care
- Tips for managing behavior during a research visit
- Visual schedule and social story templates for a clinic visit
Your voice shapes what we create. Take the survey and tell us what would make clinic and research visits easier for your family.