1974

• Susan Diaz, the parent of a child with TSC, sends a letter to Exceptional Parent Magazine and the first meeting of NTSA’s founders (Debbie Castruita, Adrianne Cohen, Susan Diaz and Verna Morris) is held.

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1975

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

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1976

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

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1979

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

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1980

• NTSA starts regional NTSA Board teleconferences.

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1982

• NTSA corporate office moves to Illinois.

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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.

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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.

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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.

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1986

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

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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.

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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.

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1989

• Scott Hamilton accepts limited role as NTSA spokesperson.

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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.

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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.

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1993

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

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1994

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

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1995

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

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1996

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

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1997

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

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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.

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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 TS.
• NTSA holds 25th Anniversary Gala in Boston, MA.

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2000

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

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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.

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• 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 that 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.

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• 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.

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• 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.

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• 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.

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• 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
• Launched online store selling branded TS Alliance merchandise
• L.A. Comedy for a Cure held for fifth time and event expands to Boston for first time

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• 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.

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• TS Alliance coordinates the International conference 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.

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• 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, which is unanimously recommended for approval.
• 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.

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