What is our hope for the future?
The TSC Alliance advocates with and on behalf of our community to ensure everyone living with TSC has what they need to live their fullest lives. With the power of individuals, families, organizations and more, we can create a future where everyone with TSC can realize their full potential—no matter how complex their journeys are to get there.
What do we do?
The TSC Alliance is an internationally recognized nonprofit that does everything it takes to improve the lives of people with tuberous sclerosis complex (TSC). We drive research, increase care quality and access, inspire hope and advocate with and for all affected by the disease.
What is our mission?
The TSC Alliance improves quality of life for everyone affected by TSC by catalyzing new treatments, driving research toward a cure and expanding access to lifelong support.
What are our guiding principles?
TSC Alliance is committed to operate and to deliver its programs using the following guiding principles:
- all actions must reflect the highest standard of integrity, candor and common decency;
- all decisions will be based on the merits, a sense of urgency and enthusiasm; and
- all opportunities for collaboration and inclusion should be considered.
What does it mean to be a member of the TSC Alliance?
The TSC Alliance is a membership organization. Anyone can elect annually to become a member by informing the TSC Alliance of their desire to do so and to participate in the corporate governance of the organization (by voting for the board of directors). This can be done by completing an online membership application, by writing the TSC Alliance or calling the Development Department at (800) 225-6872. A membership fee is not required but we do rely on the generous support of our members to assist in carrying out our important programs.
Why have we helped set up TSC Clinics?
Service to those affected by TSC across the lifespan is part of our mission, so it was natural for the TSC Alliance to encourage healthcare providers to create TSC Clinics across the country. The cornerstone of the program is to encourage TSC Clinics to provide full service to all affected by TSC. TSC Clinic designation is given to a clinic after an application has been received and peer reviewed by the Clinics sub-committee, then reviewed and recommended by the Science and Medical Committee and ultimately voted on for approval by the TSC Alliance Board of Directors.
Why was the name changed from Tuberous Sclerosis Alliance to TSC Alliance in 2021?
We changed our name to the TSC Alliance to better support our goals of raising awareness of this disease. The community as well as healthcare professionals refer to this disease as “TSC” and it’s important that our name mirror that. In fact, when our staff is asked to present at conferences the organization has frequently been called “TSC Alliance” though it was not our name at the time. This shift also allows us to avoid confusion with other diseases, such as tuberculosis or Tourette’s Syndrome.
Why is the TSC Alliance a California Corporation (legally known as the National Tuberous Sclerosis Association)?
The TSC Alliance was founded by four mothers in Southern California in 1974 and incorporated in the state of California on March 15, 1975 as the National Tuberous Sclerosis Association. We remain a California corporation, the National Tuberous Sclerosis Association, doing business as the TSC Alliance.
The TSC Alliance Endowment Fund was founded after the TSC Alliance had moved its headquarters just outside of Washington, DC. It was incorporated in the state of Maryland on April 3, 1995.
What does the TSC Alliance logo symbolize?
The TSC Alliance logo depicts intertwining colorful lines that represent everyone’s unique journey with TSC. The lines overlap and join together to represent the strength of our community. Each colorful line in the logo also represents a disease that often impacts individuals living with TSC (e.g., the purple line represents epilepsy, orange represents kidney issues, and blue represents autism).
What is the role of the Board of Directors?
The TSC Alliance Board of Directors is responsible for the financial health and success of the organization. The board establishes policies and procedures to guide the organization, monitor the financial performance, develop and examine short- and long-range planning goals, and lend their professional expertise to support the mission of the TSC Alliance. Each board member (Director) is elected by the TSC Alliance membership. A Director serves a one-time renewable three-year term. Board officers include a Chair, Vice Chair, Secretary, Treasurer and Immediate Past Chair.
What role does the TSC Alliance Endowment Fund play?
The TSC Alliance Endowment Fund was established as a nonprofit supporting entity of the TSC Alliance. The TSC Alliance Endowment Fund was specifically chartered to receive gifts that are invested to generate an income stream that will help fulfill the mission of the TSC Alliance. The Endowment Fund ensures the TSC Alliance has an ongoing source of funding to better serve families touched by TSC through research, family services and education. The TSC Alliance Endowment Fund is governed by a separate Board of Directors and annually makes an operating gift from the investment proceeds of the organization to the TSC Alliance.
What is the Professional Advisory Board (PAB)?
The Professional Advisory Board was formed to provide clinical expertise and advice to the TSC Alliance staff, Board of Directors and constituents as requested; respond to requests for assistance with specific clinical questions and/or clinical situations within the individual’s area of expertise; prepare articles for the TSC Alliance publications as needed; bring new clinical information, publications, conferences, etc. to the attention of the TSC Alliance staff; give presentations on specific issues in TSC at TSC Alliance regional and/or world TSC conferences, or to the TSC Alliance Community Regions nationwide; actively educate professional and lay audiences about TSC; and foster partnerships and collaborations within advisor’s community of expertise.
The members of the Professional Advisory Board serve a renewable three-year term beginning on January 1 of each year.
What is the International Scientific Advisory Board (ISAB)?
The International Scientific Advisory Board was formed to provide scientific advice to the TSC Alliance staff and Board of Directors as needed, and to serve as expert reviewers of grant applications submitted to the TSC Alliance. In addition, the ISAB members bring new scientific information, publications, conferences, etc. to the attention of the TSC Alliance staff; give presentations on specific issues in TSC research at TSC Alliance regional and/or international conferences, or to the TSC Alliance Community Regions nationwide; actively educate professional and lay audiences about TSC research; and foster partnerships and collaborations within advisor’s community of expertise. The members of the International Scientific Advisory Board serve a renewable three-year term beginning on January 1 of each year. Individuals must be nominated by a colleague for a position on the ISAB.
What is the Corporate Advisory Board (CAB)?
This is a group of dedicated professionals from a variety of industries that have come together to provide guidance, strategic support and act as advisors to the President and CEO. The Corporate Advisory Board offers assistance in the areas of business planning and operational growth, marketing and public relations, development and fundraising, infrastructure, technology and human resources.