Being diagnosed with tuberous sclerosis complex (TSC) can cause significant challenges within your adult life regardless of when you first received your diagnosis. The TSC Alliance is here to help.
From the stress of learning a new diagnosis to potentially processing the emotions of an offspring with this diagnosis to learning how to navigate the medical complexity of routine follow-up surveillance and management in the adult healthcare sector, all while maintaining other responsibilities, can be overwhelming.
In 2012, the TSC Alliance launched our Adult Initiative to prioritize the needs of adults with TSC, invest in research to understand how TSC changes in adulthood, and develop a support network and resources for both young adults and adults. You can find many of these resources in the Navigating the transition years of TSC and Navigating the adult years of TSC guides.
Below you can learn more about other ways to get connected and find support. If you need additional support, please contact our Support Navigators at support@tscalliance.org.
Adult Support and Resource Leads
Adult Support and Resource Leads (formerly Adult Regional Coordinators) establish and cultivate new and existing relationships with adults with TSC in their community region to maximize their independence by offering assistance and resources.
To get connected with your Adult Support and Resource Lead, email support@tscalliance.org.
Community Resource Leads (formerly Dependent Adult Transition Resource Coordinators)
The Community Resource Leads work collaboratively with the Community Region Leads to support and connect dependent adults, transitioning young adults, and their caregivers to state resources.
To get connected with your DATRC, email support@tscalliance.org.
Future Leaders Program
Future Leaders are 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. They host events, advocate on behalf of other young adults and siblings, and provide peer-to-peer support.
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! Learn more about the program by reading the full program description.
Adult topic calls
Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant issues. These calls are hosted on the third Wednesday of September, October, November, March, April and May. You can join using your computer or dial in on the phone. You MUST register in advance to participate in a call.
Register
For the full schedule of Adult Topic Calls, click here.
Transition workshops
Two one-day Transition Workshops in 2024 will feature local clinicians and consultants with expertise in the transition from pediatric to adult health care, as well as the transitions from postsecondary education, encompassing further education, employment, and independent living. These workshops will specifically focus on individuals with TSC. Sessions will provide families and individuals with recommendations and resources detailing how and when to begin preparing for the transition to adulthood. In addition, participants will be afforded networking opportunities to engage with other families and individuals residing in the area.
Look for more information on these conferences, including locations, in Spring 2024.
TSC Alliance Adult Community Facebook Page
Other helpful resources
Below find links to additional organizations and resources.
Transition resources
College resources
Other organizations
- The Arc 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 is a consulting firm that specializes in recruiting and hiring people with disabilities for full-time, competitive employment opportunities
