Below are resources especially for young adults with tuberous sclerosis complex (TSC). If you have questions or need to speak with someone, please call the TSC Alliance toll-free at 1-800-225-6872. You can find general adult resources here.
TSC Alliance Future Leaders Program
Launched in 2016, the Future Leaders Program (formerly the Junior Leaders Program) was designed with post-high school education in mind-whether it’s attending trade school, obtaining certification or earning an associate’s or bachelor’s degree. The TSC Alliance offers this opportunity for young adults with TSC, or their siblings, to volunteer with local Community Alliances and offer support while raising awareness of TSC. Throughout the school year, program participants will complete a series of awareness and support activities, concluding with an exit interview. 2021 marks the sixth year of this program and our six Future Leaders last year created new opportunities for young adults with TSC and their siblings to interact with one another, participated in Virtual March on Capitol Hill and held educational webinars, while providing a critical perspective on the unique challenges faced by individuals with TSC as they transition into adulthood.
Interested in applying? The application for the 2022-2023 school year will be posted in Summer 2022. Subscribe to TSC Waves to not miss future announcements.
- Tuberous Sclerosis Complex Adult Journal — An organizational diary for care and treatment
- What College Professors Need to Know About Tuberous Sclerosis Complex
- The Young Adult Guide of the Life Stages Program
2017 Transition Workshop Presentations
New York City
- Medical Transition and Toolkit presented by Rebecca Schultz, PhD, RN, CPNP
- Educational Issues and Transition to Community presented by Dena Hook
- Social, Housing and Employment Opportunities presented by Deanna M. Eble, Esq.
- Medical Transition Guidelines and Toolkit presented by Ann Tilton, MD
- Transition from School to Community presented by Dena Hook
- Guardianship and Financial Planning presented by Kelly Piacenti
- The Origins of TSC Mutations: A Family-Based Genetic Study Invitation presented by Joseph Gleeson, MD
Online Transition Tools
- Transition of Care Resources from the Child Neurology Foundation
- 8 Common Principles to Assist with the Transition of Care
- Tenants Rights and Housing Assistance for the Disabled
- Transition to Adulthood: Home Remodeling for Young Adults with Special Needs
- Special Needs Checklist: How Disability-Friendly is Your City?
- Vocational Training for Adults with Special Needs
- How to Have a Good College Experience — MP3 recording of Young Adults with TSC call on March 17, 2016. Note: download may take up to 2 minutes before playing.
Online Search Tools
- BestColleges.com — BestColleges.com a resource for any prospective college student, and we strive to help students make an educated choice about their future. Through the use of student surveys, faculty surveys, independent research, ranking systems, and the input of highly credible and authoritative sources, we have created a database of schools to help students and their families learn more about their best options for higher education.
- Accredited Schools Online: Accredited College Search Tool
- Accredited Schools Online: College Accreditation Guidebook
- Affordable Online Colleges Guide
- Research College and University Scholarship Information
- Scholarship Guide for Students with Disabilities
- College Resources for Students with Disabilities
- Scholarships for Students with Disabiities
- Social Security Benefits Guide
The Arc — The TSC Alliance has a formal partnership with The Arc, which promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. They provide advocacy, training, and support services for people with intellectual and developmental disabilities through local Arcs.
Bender Consulting Services — Consulting firm that specializes in recruiting and hiring people with disabilities for full-time, competitive employment opportunities
Assisted Living Care — Online resource for loved ones needing assisted living options.