Adolescents and young adults with mitochondrial, metabolic, and rare genetic disorders often find themselves fighting for survival on a daily basis. These diseases cause a host of medical issues that can affect brain development, motor control and organ function.
Youth with these diseases will be under intensive medical care their entire lives. As they reach young adulthood, the transition from pediatric care into adult care can be overwhelming. New doctors, new systems, and new responsibilities to manage their own care are coupled with life transitions like finding a job, living independently, and managing relationships.
Support is critical, and hard to find. That’s where Next Step comes in.
Face Forward empowers youth with genetic disorders to develop life skills, find community and become self-advocates so they can move beyond their challenges to become strong, independent, productive adults. The program is centered around a four day conference, co-designed by the youth, health care professionals and Next Step. Workshops, a resource fair, music therapy and creative and social opportunities combine to create a curriculum that addresses transitional issues and arms youth with tools, information and hope for the future.