ARRE Foundation announces appointment of Sarah Scott to staff team

The ARRE Foundation is thrilled to announce the appointment of Sarah Scott as the new Family Education and Engagement Coordinator. Sarah brings a wealth of experience with her background in social work and her deep personal connection to the ASXL community. Her son Sammy was diagnosed with Shashi-Pena Syndrome (ASXL2-related disorder) in 2016, and Sarah has been actively involved in supporting other families ever since. In her new role, Sarah will be responsible for developing and promoting educational materials tailored to families affected by ASXL-related disorders, ensuring they have the resources needed to understand and navigate their unique challenges.

Sarah has experience supporting the ASXL family community as a volunteer with the Newly Diagnosed Outreach Committee and as a speaker at past ARRE Foundation family conferences and educational events. As part of the ARRE Foundation staff team, she will focus on educating families and engaging them in the ARRE Foundation's broader mission, which includes fostering community involvement through fundraising, volunteering, and participation in critical research studies.

“We are excited to have Sarah on board and look forward to the incredible impact she will have in empowering and supporting families in the ASXL community in this new role,” says Amanda Johnson, ARRE Foundation Executive Director. “Sarah has been a passionate advocate for the ASXL community for many years. She brings warmth, empathy, passion, and so much lived experience to this role to help us better support families and build out our educational and engagement offerings.”