The TSC Alliance has developed services and resources to support constituents from the time they receive a TSC diagnosis (either at birth or later in life) through the course of their lives to help them mitigate the evolving challenges in living with TSC. These services include staff and an army of advocates and volunteers tasked with providing information and educational resources.
We recognize TSC Clinics in the United States and around the world that meet set standards for comprehensive care for those with TSC. In order to qualify as TSC Clinic or TSC Center of Excellence, a clinic must follow established TSC clinical consensus guidelines developed by an international group of clinical experts, many of whom are members of the TSC Alliance Professional Advisory Board. Clinics that achieve even higher standards are recognized as TSC Centers of Excellence. Several clinics have a TSC Clinic Ambassador who works with the TSC Clinic either in an onsite (best situation) or an offsite capacity. The Clinic Ambassador is responsible for providing emotional assistance to newly diagnosed families, including establishing relationships with parents to help in the navigation of care for their child diagnosed with TSC, which includes an array of specialists crucial to their child’s care along with local and regional resources.
Following the original point of contact, some examples of the support services provided by our outreach department include:
- An Emergency Hot Line (9 am to 9 pm Eastern)
- One-on-one educational advocacy and support to families as well as school systems through web and conference calls
- Topic calls for adults, parents and dependent adults focused on a particular subject that relates to living with TSC
- One-day Regional Conferences featuring local leading researchers and clinicians specializing in TSC speaking about current treatment options, basic and transitional research, and clinical trials, as well as speakers discussing transition issues such as community programs, housing, medical care and employment
- World TSC Conferences held every 4-5 years to bring together individuals and families affected by TSC, international leaders in the field of TSC clinical care, researchers and resource providers to share updates on current research efforts, the latest consensus guidelines on diagnosis and treatments, and resources for the many challenges those with TSC face every day.
- A bimonthly e-newsletter TSC Matters, an adult e-newsletter TSC Waves, an e-newsletter for researchers TSC Alert and a monthly podcast series TSC Now.
- A variety of publications, ranging from our magazine, Perspective, to Life Stages Guides based on age.
We also coordinate our army of volunteers who serve numerous peer-to-peer and expert support roles in the community, including:
- Community Alliance Chairs across the country facilitate local connections for individuals and families affected through family gatherings, educational meetings with TSC experts and family support and education through personal contact, e-mail communication and newsletters.
- Education Parent Mentors work collaboratively with Parent Training and Information Centers in the states to support parents/caregivers navigating the special education system in securing an appropriate education for their children. Numerous publications are provided to parents/caregivers to support and educate them in maneuvering the complex special education system in public schools.
- Educator Mentor Program (EMP) supports school systems in understanding the learning needs of children with TSC. The EMP is made up of administrators, therapists, physiologists, and teachers from pre-kindergarten to college level having experience with TSC. TSC 101 school trainings are provided to help educators understand the complexities of TSC and learning issues.
- Future Leader Program is tasked with addressing the specific needs of the young adult population.
- Dependent Adult Transition Resource Coordinators are knowledgeable in state resources, events, support meetings, conferences, and any new research on TSC that pertains to dependent adults and transitioning young adults with TSC and their caregiver.
- Adult Regional Coordinators provide one-on-one support for adults in their region and help newly diagnosed adults connect with other adults.
A state-by-state guide of these volunteer resources can be found here and resources on school issues can be found here.
Our vision is for all individuals with TSC to live healthy and productive lives, free of complications and manifestations of the disease. To accomplish this, we must provide our constituents with the support and information they need through every phase of their life.