Skip Navigation Links
 
Text Size
 
 

MISSION STATEMENT

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

Logo

The intertwining arcs represent an abstract of the double helix or the structure of DNA. The spiral also shows that 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.

History

The Tuberous Sclerosis Alliance was founded in 1974 by four mothers coming together to provide fellowship, generate awareness, pursue more knowledge and provide hope to those that shared the common bond of tuberous sclerosis complex. These goals are still driving the organization today.

Historical Timeline (1974 to Present)

1974

  • The first meeting of National Tuberous Sclerosis Association's (NTSA’s) founders -- Debbie Castruita, Adrianne Cohen, Susan (Diaz) McBrine and Verna Morris -- is held in Southern California. Susan had previously sent a letter to Exceptional Parent magazine seeking other parents of children with TSC.

............................................................................

1975

  • Federal tax exemption received from the IRS.
  • Bylaws adopted by the membership.
  • Medical advisory board established.
  • First NTSA Conference held.

............................................................................

1976

  • First newsletter is published.
  • Manual R. Gomez, M.D., publishes new study of 150 cases of TSC.

............................................................................

1979

  • First edition of Tuberous Sclerosis, edited by Manual R. Gomez, M.D., is published by Raven Press.

............................................................................

1980

  • NTSA starts regional NTSA Board teleconferences.

............................................................................

1982

  • NTSA corporate office moves to Illinois.

............................................................................

1983

  • Ann Landers features a column about TSC and it triggers 1,500 phone calls and 650 letters to NTSA.
  • First annual gift-wrap campaign raises $3,246.

............................................................................

1984

  • NTSA celebrates 10th anniversary, with more than 1,800 families.
  • NTSA funds first research grant of $5,800 to Dr. Ken Dumars, University of California, Irvine.

............................................................................

1985

  • NTSA Board of Directors holds first face-to-face meeting in New York.
  • TSI International is launched with a meeting in London; representatives from USA, UK, Germany and the Netherlands are present.
  • NTSA funds $23,500 in research grant awards.

............................................................................

1986

  • First TSC clinic opens at Wyler’s Children’s Hospital in Chicago.
  • NTSA funds $74,000 in research grant awards.

............................................................................

1987

  • TSC gene localized to chromosome 9.
  • NTSA funds $72,300 in research grant awards.
  • NTSA sponsors a research workshop in Irvine, CA.
  • NTSA approved for membership in National Voluntary Health Agencies.

............................................................................

1988

  • NTSA headquarters moves to Washington, D.C. area.
  • Second edition of Tuberous Sclerosis edited by Manuel R. Gomez, M.D., is published by Raven Press.
  • President Reagan signs a resolution declaring May 8-15 as National Tuberous Sclerosis Awareness Week.

............................................................................

1989

  • Scott Hamilton accepts limited role as NTSA spokesperson.

............................................................................

1990

  • NTSA and New York Academy of Sciences present International Symposium on tuberous sclerosis in Bethesda, MD.
  • Tuberous Sclerosis and Allied Disorders: Clinical, Cellular and Molecular Studies is published by the New York Academy of Sciences.

............................................................................

1992

  • Second TSC gene is linked to a region on chromosome 16.
  • NTSA funds $156,701 in research grant awards.
  • NTSA testifies before Congress about increased research funding for TSC.

............................................................................

1993

  • TSC2 gene on chromosome 16 is identified by European consortium.
  • Sixth International Tuberous Sclerosis Symposium held at Mayo Clinic in Rochester, MN.

............................................................................

1994

  • 20th Anniversary International Symposium & Gala held in Crystal City, VA.

............................................................................

1995

  • NTSA Endowment Fund and Eternal Flame Society are established.
  • NTSA approves five-year Strategic Plan.
  • NTSA funds $210,000 in research grant awards.

............................................................................

1996

  • Annual revenues exceed $1 million.
  • Jonathan Taylor Thomas & Marg Helgenberger appear in NTSA public service announcements.

............................................................................

1997

  • NTSA launches first website.
  • TSC1 gene on chromosome 9 is identified by International Consortium.
  • Public lecture held at National Institutes of Health (NIH).

............................................................................

1998

  • NTSA launches research program and funds $886,741 in research grant awards.
  • Historic TSC Consensus Conference held in Annapolis, MD.
  • 10th International Tuberous Sclerosis Symposium held in Goteborg, Sweden.
  • NTSA & Panasonic hold first TSC videoconference.

............................................................................

1999

  • Third edition of Tuberous Sclerosis Complex published by Oxford University Press.
  • NTSA holds first National Family Conference in Washington, DC.
  • NTSA serves more than 20,000 constituents, including 11,000 family members and adults personally impacted by TSC.
  • NTSA holds 25th Anniversary Gala in Boston, MA.

............................................................................

2000

  • NTSA adopts a new logo and begins doing business as the Tuberous Sclerosis Alliance (TS Alliance).
  • TS Alliance commits to hire a professional fund development team to increase fundraising efforts.

............................................................................

2001

  • TS Alliance obtains support from Congress to start TSC Program in Department of Defense Congressionally Directed Medical Research Program.
  • Community outreach program is launched to increase awareness, visibility and fund raising in local communities.

............................................................................

2002
  • TS Alliance partners with NIH to hold a scientific research conference "New Perspectives In Tuberous Sclerosis Research" which will produce a comprehensive research plan for TSC.
  • TS Alliance website boasts average of 5,000 publication downloads each month.
  • TS Alliance announces partnership with The Rothberg Institute for Childhood Diseases to advance drug discovery efforts specific to TSC.
  • TS Alliance awards $1 million in funding to laboratories within Harvard Medical School, Brigham and Women’s Hospital and Massachusetts General Hospital.
  • Science office is created under the leadership of Cheryl Dunigan, PhD and Vicky Whittemore, PhD, both of whom have extensive experience in TSC related research areas.
  • TS Alliance announces the diagnostic genetic test for TSC has been transferred from a TS Alliance-funded research environment to a fee-for-service clinical laboratory, Athena Diagnostics.

............................................................................

2003
  • TS Alliance and LAM Foundation sponsor clinical trial on treatment of kidney and lung manifestations with Rapamycin. 
  • Based on the success of the government advocacy program, the TS Alliance selects the firm of Cavarocchi, Ruscio, Dennis & Associates, L.L.C. to represent the TS Alliance on Capitol Hill.

............................................................................

2004
  • TS Alliance Development Team raises $3.2 million in revenue and support.
  • TS Alliance Government Relations efforts net $3.2 million in research funds from the Department of Defense.
  • TS Alliance implements its first Regional TSC Conferences in St. Paul, MN and New York City.
  • TS Alliance begins to formally address the needs of adults affected by TSC.
  • TS Alliance increases its number of volunteers to more than 1,000.

............................................................................

2005
  • TS Alliance increases Community Alliances to 26 locations nation-wide.
  • TS Alliance celebrates 30th Anniversary with a Gala in NYC, raising $500,000.
  • TS Alliance Government Relations efforts net $4.3 million in Department of Defense TSC research funds, a $1.1 million increase from 2004.
  • The TS Alliance amends its Articles of Incorporation to be inclusive of people with TSC across their lifespan and continues to expand services for adults with TSC.
  • TS Alliance debuts a newly redesigned website and averages 1.2 million hits monthly.
  • TS Alliance moves ahead to develop a TSC Natural History Database.
  • TS Alliance partners with the LAM Foundation to initiate the first clinical trial with an FDA-approved drug (Rapamycin).
  • Nine institutes at the National Institutes of Health have funded approximately $10 million in TSC research.
  • TS Alliance sponsors Regional TSC Conferences and its first-ever TSC Adult Summit.

............................................................................

2006
  • National TSC Conference held outside Chicago with 1,000 participants.
  • Regional TSC Conferences held in Dallas and Ann Arbor.
  • Introduced "Ask the Expert" lecture series in six locations across the country.
  • Developed partnerships with Polycystic Kidney Disease Foundation and American Epilepsy Society.
  • Continued increased media coverage, both nationally and in local media markets, including Times Square billboard displaying Julianne Moore PSA; three episodes of "House" (FOX TV series) mention tuberous sclerosis complex.
  • TS Alliance volunteers make more than 200 visits to Capitol Hill to advocate for increased research funding.
  • TSC Natural History Database launched.
  • Continued expansion of services for adults with TSC, including a new Adult Journal, Adult Town Hall Meeting, specific adult education tracks at national and regional conferences, and increased adult participation in Community Alliances.
  • Introduced online store selling branded TS Alliance merchandise.
  • Hollywood Comedy for a Cure held for fifth time and event expands to Boston for first time.

............................................................................

2007
  • TS Alliance expands TSC Natural History Database to 6 additional TSC Clinic sites.
  • TS Alliance and the PKD Foundation co-fund two research grant awards to study the link between TSC and polycystic kidney disease.  The PKD Foundation also co-funds a grant award with the TS Association of the UK.
  • Comedy for a Cure expands to Chicago.
  • $4 million appropriation from DOD TSCRP program reinstated.

    ............................................................................
2008
  • TS Alliance coordinates the International Research Conference on Tuberous Sclerosis Complex: From Genes to New Therapeutics in Annapolis, MD.
  • TS Alliance expands TSC Natural History Database to 6 additional TSC Clinics for a total of 14 participating sites.
  • Enrollment in the TSC Natural History Database study tops 300!
  • Rapamycin (Sirolimus) is shown to be effective in preventing and treating seizures in an animal model of TSC.
  • Topical rapamycin (Sirolimus) is shown to be effective in reducing skin tumor growth and improving survival in an animal model of TSC.
  • Publication in the New England Journal of Medicine reports the results of the single site trial for the use of rapamycin (Sirolimus) to treat renal angiomyolipomas in individuals with TSC and/or LAM.
  • Pharmaceutical companies planning additional international clinical trials for TSC.
  • TS Alliance launches nation-wide IEP training program. 
  • TS Alliance introduces monthly, online TSC sibling chat program. 
  • TS Alliance produces widely successful Infantile Spasms educational video.
  • Regional TSC Conferences held in Seattle and Atlanta. 
  • TS Alliance gains $6 million appropriation from DOD TSCRP program.

............................................................................

 2009
  • Regional TSC Conference held in Denver.
  • TS Alliance introduces research conference call series – one featured Drs. Elizabeth Henske and Michael Wong, and another featured Drs. Howard Weiner and Guy McKann.
  • TS Alliance and TSC epilepsy surgery featured on “The Doctors” syndicated TV program.
  • During an FDA Advisory Panel Hearing, TS Alliance constituents advocate for approval of vigabatrin (Sabril), which is eventually approved by the FDA to treat infantile spasms
  • TS Alliance launches new outreach program via social networking sites, including Twitter, Facebook, MySpace and YouTube.
  • Novartis Oncology launches multi-center, international clinical trials for subependymal giant cell tumors and renal angiomyolipomas in TSC.
  • Group of investigators led by Mustafa Sahin, M.D., Ph.D. develop protocol for the study of the impact of an mTOR inhibitor on neurocognition and seizures in individuals with TSC, and gain approval for study from Novartis Oncology.

............................................................................

2010
  • Fourth edition of Tuberous Sclerosis Complex edited by Kwiatkowski, Whittemore, and Thiele is published by Wiley-Blackwell.
  • FDA approves the first drug (called Afinitor) designated to specifically treat SEGAs associated with TSC.
  • Introduction of 18 nation-wide Town Hall Meetings to educate constituents on a local basis.
  • TS Alliance establishes TSC Drug Screening Program.
  • Continuation of highly popular and free research-focused educational teleconference series.
  • H.P. Acthar Gel approved by FDA to treat infantile spasms.
  • TS Alliance spends $1.4 million for TSC research.
  • TSC Natural History Database enrollment reaches more than 1,000 participants at 15 U.S.-based TSC Clinics.
  • Introduction of several new tools for parents/caregivers to advocate for their children in school, including IEP training sessions and new publications.
  • TS Alliances offers new online support community in partnership with Inspire.com.
  • Awareness campaign features educational banner ads running on epilepsy.com and usnews.com.
  • 2010 “March on Capitol Hill” generates more than 390 Congressional visits to urge increased Federal funding for TSC research
  • For FY 2010, special events raise nearly $1.5 million, which represented 50 percent of the TS Alliance’s overall revenue.

............................................................................

2011
  • TS Alliance implements new Adult Initiative to ensure continued focus on the needs of adults with TSC and their specific issues.
  • Four new videos produced to address education system issues for parents of children with TSC.
  • Three Town Hall Meetings held to educate constituents on a local basis.
  • Special events raise nearly $1.6 million net, representing 40 percent of the TS Alliance’s overall revenue.
  • A new TSC Clinic in Seattle opens that evaluates and treats infants to young adults with TSC.
  • TS Alliance receives $200,000 grant from the Pediatric Epilepsy Foundation to support the TSC Natural History Database.
  • TS Alliance is awarded a $500,000 challenge matching grant from the Harold Simmons Foundation and the Unlock the Cure Campaign is launched.
  • TS Alliance recognizes the 10th anniversary of the TSC research program in the Department of Defense’s Congressionally Directed Medical Research Program, which has funded $35 million in research directly relevant to TSC since 2001.
  • TS Alliance celebrates 10th anniversary of the Community Alliances.
  • The TS Alliance sponsors an International TSC Research Conference – the 2011 Summit on Drug Discovery in TSC and Related Disorders – in Washington, DC, where its International Scientific Advisory Board meets face-to-face for the first time. 
  • TS Alliance hosts a TSC International (TSCi) Summit, which attracts representatives from 19 TSC organizations from around the world; meeting results in development of the first TSCi website.
  • TS Alliance joins the National Organization of Rare Diseases (NORD), which names TS Alliance President & CEO Kari Luther Rosbeck to its Board of Directors.

    ............................................................................
2012
  • TS Alliance earns 2012 GreatNonProfits Top-Rated Award.
  • The U.S. Food and Drug Administration approves Afinitor® as a treatment for renal angiomyolipoma associated with TSC.
  • TS Alliance sponsors the first TSC Clinical Consensus Conference since 1998 to update the recommendations for diagnosis, surveillance and management of TSC. The conference includes participants from 14 countries.
  • For the first time, adults with TSC participate as members of the organization's Grants Review Committee.
  • The TSC Clinical Research Network is awarded grants to initiate two clinical studies at five TSC Clinics to find biomarkers or signals that identify which newly diagnosed infants with TSC are at highest risk of developing infantile spasms by age two or signs of autism by age three.
  • Organization continues highly popular Regional TSC Conference Series with educational events in Boston, Houston, Los Angeles and Washington, DC.
  • TS Alliance leads and participates in first world-wide TSC Global Awareness Day, held May 15.
  • TS Alliance introduces new community-driven event called Art for a Cure, which features an online competition and a New York gallery exhibit highlighting art created by children and adults with TSC.
  • Another new major event, the Step Forward to Cure TSC® National Walk on the Mall in Washington, DC, attracts more than 400 participants from 14 countries.
  • Community special events raise $1.4 million.
  • A new Young Adult Transition Task Force forms to develop strategies and materials to support young adults with TSC.
    ............................................................................
2013
  • TS Alliance raises $4.2 million for community educational/support programs and research.
  • Four additional videos produced to help parents navigate education system challenges.
  • International Research Conference on TSC and Related Disorders: Molecules to Medicine held in Washington, DC.
  • Open-access publication of updated clinical consensus guidelines for diagnosis, management, and treatment of TSC.
  • TSC Natural History Database reaches enrollment of 1,300 participants.
  • “Where in the World is TSC” Global Awareness Day phenomenon involves hundreds of people worldwide through social media.
  • First global TSC Clinic is recognized in Israel by the TS Alliance.
  • Research webinar series replaces research teleconferences.
  • Four new videos released addressing kidney involvement, seizures, peer support and physician education.
  • Use of TS Aliance website doubles with monthly average of 35,000-38,000 unique users.
  • Community Alliances host 20 educational meetings and 33 gatherings in local communities across the country.
  • Four Regional TSC Conferences held in Grand Rapids, MI; New York, NY; Birmingham, AL; and Kansas City, MO.
  • Congress appropriates $6 million to the Department of Defense's TSC research program.
  • Partnered with PeerView Institute to offer CME course to educate physicians of new TSC Clinical Consensus Guidelines.

    ............................................................................

 
  Skip Navigation Links
Find a Local Branch
Find a Global Alliance
Become a Volunteer
Become a Member
Government Outreach
Connect With Others
Ways to Give
Your Impact
Facebook YouTube Google+ Twitter TSAlliance Support Linkedin Instagram
 
Make a Donation to the Tuberous Sclerosis Alliance
  calendar
 
 
   



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


ABOUT TSC
What is TSC?
How is TSC Diagnosed?
Signs of TSC
Genetics of TSC

INDIVIDUALS & FAMILIES
Living with TSC
Family Support
Adult Resources

TSC Connect
Brochures & Booklets
Information Sheets
Life Stages Guides & Personal Journals

Perspective Magazine Archives
TSC Clinics

RESEARCHERS
TS Alliance Grants Program
Other TSC Funding Opportunities
TSC Alert Newsletter Archives
Clinical Trials
TSC Natural History Database
Research Resources
International Scientific Advisory Board

Tuberous Sclerosis Alliance Online CommunityTuberous Sclerosis Alliance Support Community