The TS 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 and educational resources.
We recognize 49 clinics in the United States and three in Israel that meet set standards for comprehensive care for those with TSC. A TSC Clinic Ambassador 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:
- A 24-hour Emergency Hot Line
- One-on-one educational advocacy and support to families as well as school systems through conference calls, SKYPE, and FACETIME
- 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
- A variety of publications, ranging from our magazine, Perspective, to Life Stages Guides based on age to manifestation-specific information sheets
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 that 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
- Educational Liaisons who work collaboratively with Parent Training and Information Centers in the states to connect parents/caregivers of school age children to educational advocacy trainings
- Educator Mentor Program (EMP) to support 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.
- Young Adult and Junior Leader Program tasked with addressing the specific needs of the young adult population
- Dependent Adult Transition Resource Coordinators who 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 who provide one-on-one support for adults in their region and help newly diagnosed adults connect with other adults
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.