We need YOU!  We are looking for volunteers to launch our Regional Representative program in North America.  This program is designed to be a support and resource program for our our SAS families to help connect and share resources.

Responsibilities include:

  1. Being a point of contact for families in your area (state/region).  Families are often looking to connect with others close by and understand available resources in the area.  It’s ok – you don’t have to be an expert – just willing to help get the answer or connect them with others who can help!
  2. Be a resource.  Our families so often want to better understand what is available for financial resources in your state. Helping other families understand how to navigate the maze of Medicaid or state funded resources is great.  Or to help connect families to doctors which are already seeing other SAS patients.

The time committement can vary from as much time as you can give.  It’s often just answering emails and connecting families.  We encourage quarterly virtual meet ups via Zoom.  If you like to learn more about the program, please reference our informational session recording here: https://youtu.be/8xrFKj3HLHk

If you have any questions or if you are interested in participating, please reach out to Jenna Garwood by at FamilySupport@Satb2gene.org. Our first training will be held on Tuesday, June 7th at 7:00 pm EST/5:00 pm MST/4:00 pm PST via Zoom.  Register ahead of time so you can receive the link via email to join.

Key states where we are still seeking volunteers include:


North Carolina



New Jersey