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FREQUENTLY ASKED QUESTIONS ABOUT THE TS ALLIANCE 

 

What is our mission?

The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex while improving the lives of those affected.

What is our vision?

The TS Alliance envisions a world where no one has to endure the devastating effects of tuberous sclerosis complex.

What do we do?

We provide information, access to resources and a place for hope for those affected by tuberous sclerosis complex. Over the years, we have expanded our mission to improve quality of life for individuals and families affected by TSC through:

  • the stimulation and sponsorship of research;
  • the development of programs, support services and resource information; and
  • the development and implementation of public and professional education programs designed to heighten awareness of TSC.

Since 1984, the TS Alliance has funded $17.4 million in support of basic, translational and clinical research.  Because of our advocacy for research and promoting young investigators, we funded and cultivated a new generation of senior scientists who today receive generous funding from sources such as the National Institutes of Health and the Department of Defense Congressionally Directed Medical Research program.  Because of the strength of our grassroots volunteers, more than $165 million has been spent on TSC research over the past 10 years from these important sources. 

How can we grow and be more visible?

More awareness + more supporters = more funds for research, which leads to better treatments and ultimately a cure.  With greater visibility, we will be in a stronger position to grow our donor base and investors.  In turn, this increases funds available for research, improved treatments and ultimately a cure.

Why was the name changed from National Tuberous Sclerosis Association (NTSA)?

 

The name was changed to the Tuberous Sclerosis Alliance to reflect the growing organization and our commitment to forming “alliances” with TSC grassroots volunteers across the country, TSC Clinics and healthcare providers, researchers and scientists, other nonprofits, and corporations.   

Why are we referred to as the TS Alliance and not TSA?

The Tuberous Sclerosis Association was formed in Great Britain in 1977 when we were known as the NTSA. The organization in Great Britain is known as TSA, and not to confuse the two, we are known as the TS Alliance. 

What does the TS Alliance logo symbolize?

The intertwining arcs represent an abstract of the double helix or the structure of DNA. The spiral also shows the TS Alliance’s commitment to family and patient support, education and research are interdependent.

The lower arc signifies shelter and a place for people to congregate. It symbolizes the bridge from where we've been to where we want to go. Its structure reassures us that it will always be here, for as long as we need it. The upper arc shows arms reaching out to people, to knowledge and to progress.

How is TS Alliance membership determined?

 

Anyone can elect annually to become a member by informing the TS Alliance of their desire to do so and to participate in the corporate governance of the organization.  This can be done by completing an online membership application, by writing the TS Alliance or calling the Development Department at (800) 225-6872.  A membership fee is no longer required but we do rely on the generous support of our members to assist in carrying out our important programs.   

What research should we fund?

Most TS Alliance research grants support small, focused projects that allow investigators to develop preliminary data to compete for funding from larger organizations such as the National Institutes of Health (NIH).  Other TS Alliance research grants support post-doctoral fellowships to encourage young investigators to engage in TSC research.  Many of these investigators will continue to pursue TSC research when they establish their own independent laboratories.

TS Alliance-funded research helped identify the two genes responsible for causing TSC and helped create a genetic test for the disease.  In fact, TSC is one of the few genetic diseases in which the genes have been identified; the function of the genes and their protein products have been elucidated; and tsignificant opportunities exist to understand and treat the specific manifestations of the disease. 

The TS Alliance currently funds nearly $1.5 million annually in research grant awards to investigators.  These funds support three or four postdoctoral researchers per year.  Also, since 2010, the Drug Screening Program has funded three projects aimed at eliminating tumor cells and two projects to improve neurologic activity.  Rothberg Courage Awards are funding research including clinical studies and laboratory work leading to additional clinical studies.

Why do we sponsor a research conference?

Researchers funded by the TS Alliance are strongly urged to collaborate with each other. Sharing information with each other is important to us for a variety of reasons.  It helps the researchers to expand on ideas and collaborate, and we avoid funding duplicate research. Conferences also arm the TS Alliance with the most updated findings in research so we continue to nurture progress toward a cure.  

Additionally, in June 2012 the TS Alliance brought together more than 60 health care professionals, each having expertise treating one or more aspects of TSC, to update consensus recommendations for the diagnosis, surveillance, and management of TSC.  The prior guidelines were based on a 1998 consensus conference, and the TSC field has made tremendous advancements in the meantime.  To ensure that the resulting recommendations would benefit from diverse perspectives and be internationally applicable, experts from 14 different countries were included.

Why did we invest in the TSC Natural History Study and Database?

The Tuberous Sclerosis Complex (TSC) Natural History Study and Database was created in 2006 to:

  1. follow all of the manifestations of the disease over each individual’s lifetime;
  2. identify groups of individuals with TSC for future clinical studies and/or clinical trials for treatments of epilepsy, autism, tumor growth and the other manifestations of TSC;
  3. improve the understanding of the progression of the disease over the lifespan of individuals with TSC to improve health care; and 
  4. serve as a resource that will hasten the discovery of new treatments and therapies for individuals with TSC and for other causes of epilepsy, autism, cancer, and heart and lung disease.

Prior to the creation of the database, there had been no long-term studies on the natural history of neurological or other manifestations of TSC. Small population studies of the manifestations of TSC have been conducted, but these studies included only small numbers of individuals with TSC and no studies had followed these individuals throughout their lifespan.  In addition, no studies had correlated the specific mutation in either of the known TSC1 or TSC2 genes and the neurological or other features of TSC and no study included large-scale phenotype-genotype studies compiled, or large cohorts of individuals with TSC that can be accessed for participation in approved clinical studies and/or clinical trials prior to the database.  

The TSC Natural History Database collects data in both a retrospective and prospective manner from individuals with TSC over their lifespan during their regular visits to TSC Clinics nationwide.  There are currently 15 TSC Clinics participating and the goal is to enroll 2,000 individuals.  

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 TS 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.

What are the guiding principles of the TS Alliance?

TS Alliance is committed to operate and to deliver its programs using the following guiding principles:

  1. all actions must reflect the highest standard of integrity, candor and common decency;
  2. all decisions will be based on the merits, a sense of urgency and enthusiasm; and 
  3. all opportunities for collaboration and inclusion should be considered.

What is the role of the Board of Directors?

The TS Alliance Board of Directors is responsible for the financial health and success of the TS Alliance. 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 TS Alliance.  Each board member (Director) is elected by the TS 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.

Why are there Community Alliances rather than chapters?

The TS Alliance started Community Alliances in 2001 with the goal of providing a network of local connections to better serve parents, teens and adults affected by TSC.  We chose volunteer branches rather than state-incorporated chapters because we wanted to work with the amazing strength of our grassroots community volunteers, provide a structure to succeed without incurring unnecessary overhead costs.  We had also seen chapter systems divide rather than unite communities.      

The words community and alliance mean, “joining together for a common purpose.” A community alliance is an informal, yet structured, group of empowered and caring volunteers that work closely with the TS Alliance to facilitate local connections for individuals and families affected by tuberous sclerosis complex, raise revenue, and increase awareness while supporting the mission of the organization. The Community Alliance program fosters stronger links between the TS Alliance, communities and individuals across the country. 

What is the Professional Advisory Board (PAB)?

The PAB was formed to provide clinical expertise and advise to the TS 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 TS Alliance publications as needed; prepare TSC Information Sheets on specific clinical issues in TSC and/or review TSC Information Sheets prepared by other PAB members; bring new clinical information, publications, conferences, etc. to the attention of the TS Alliance staff; give presentations on specific issues in TSC at TS Alliance regional and/or national conferences, as part of the Meet the Expert series, or to the TS Alliance Community Alliances 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 ISAB was formed to provide scientific advice to the TS Alliance staff and Board of Directors as needed, and to serve as expert reviewers of grant applications submitted to the TS Alliance.  In addition, the ISAB members bring new scientific information, publications, conferences, etc. to the attention of the TS Alliance staff; give presentations on specific issues in TSC research at TS Alliance regional and/or national conferences, as part of the Meet the Expert series, or to the TS Alliance Community Alliances 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)?

The CAB 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 CAB will be called upon to offer assistance in the areas of business planning and operational growth, marketing and public relations, development and fundraising, infrastructure, technology and human resources.    

What role does the TS Alliance Endowment Fund play?

The TS Alliance Endowment Fund was established as a nonprofit supporting entity of the TS Alliance.  The TS 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 TS Alliance.  The Endowment Fund ensures the TS Alliance has an enduring source of funding to better serve families touched by TSC through research, family services and education.  The TS 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 TS Alliance.   

Why is the TS Alliance a California Corporation (legally known as the National Tuberous Sclerosis Association)?

 

The Tuberous Sclerosis 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 Tuberous Sclerosis Alliance. 

 

The Tuberous Sclerosis Alliance Endowment Fund was founded after the TS Alliance had moved its headquarters just outside of Washington, DC.  It was incorporated in the state of Maryland on April 3, 1995.

 
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Unlock the Cure: The Tipping Point in the Battle Against TSC
Tuberous Sclerosis Alliance Overview
La Esclerosis Tuberosa (Spanish Intro to TSC)
Infantile Spasms & TSC: A Devastating Diagnosis
Questions & Answers About the TS Alliance


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