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
The TSC Alliance® Future Leaders Program is a group of individuals ages 17 through 27 including young adults with TSC, siblings of someone with TSC, or other relatives of someone with TSC who are dedicated to building community leadership skills through volunteerism. The Future Leaders program is committed to empowering young adult leaders through mentorship, volunteer services and grassroots advocacy to help develop community-minded change makers and leaders.
Future Leaders will meet monthly to plan and implement young adult volunteer projects, develop strong communication through online and in-person events, and participate in grassroots advocacy initiatives throughout the calendar year (Jan 1, 2023 – Dec 31, 2023) .
If you are between the ages of 17 and 27 and are a young adult with TSC, a sibling, or a TSC relative and are interested in finding a place where you can make new friends, learn valuable leadership skills, and make a difference, the Future Leaders Program is great opportunity to get involved and we are excited to meet you!
The application for the 2024 Future Leaders Class will be available later this year.
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
- 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 Disabilities
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.