Spotlight on TSC Alliance

2024 marks the 50^th anniversary of the TSC Alliance®! Throughout the year, we’ll celebrate five decades of progress as well as look forward with much promise for the future.

In 1974 four moms refused to accept the status quo.

They formed an organization and in doing so started a community. For the next 50 years this organization and community have forever changed what we know about tuberous sclerosis complex and what living with this disease looks like. It has been:

50 years of transformation.

We started as the National Tuberous Sclerosis Association, then the Tuberous Sclerosis Alliance and finally the TSC Alliance today. And while our name has changed our commitment to creating a future where every person and family affected by TSC has what they need to live their fullest lives endures.

50 years of progress.

Where advancements in research have led to everything from the discovery of the two TSC genes to the approval of three FDA drugs specifically for TSC. Where collaboration amongst compassionate doctors have led to consensus guidelines that have improved clinical care globally. And where those four moms soon became a network of thousands around the world dedicated to supporting everyone affected by TSC.

50 years of promise.

We are shifting the paradigm; new studies are exploring not just how we treat manifestations of TSC but whether we can prevent them entirely. We are braving new frontiers and taking on the most challenging aspects of this disease. We move forward confidently, because for five decades we have overcome adversity time and time again.

The TSC Alliance stands on the shoulders of those who came before us. But while we honor our past, we also look to the future because our work is not yet done. This is just the start of our story.

50 forward.

A walk through the TSC Alliance’s history

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. Manuel R. Gomez, MD, publishes new study of 150 cases of TSC.
1979	First edition of Tuberous Sclerosis, edited by Manuel R. Gomez, MD, 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, which 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, MD, is published by Raven Press. President Ronald 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 TSC 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 and 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 and 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 and 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 the Department of Defense Congressionally Directed Medical Research Program. National Family Conference held in San Diego with 461 participants. 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 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 The 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 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 New York City, 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. 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 857 participants. Regional TSC Conferences held in Dallas and Ann Arbor. TS Alliance introduces “Ask the Expert” lecture series in six locations across the country. TS Alliance develops partnerships with Polycystic Kidney Disease Foundation and American Epilepsy Society. Continued increased media coverage, both nationally and in local media markets, includes Times Square billboard displaying Julianne Moore public service announcements; three episodes of “House” (FOX TV series) mention tuberous sclerosis complex. TS Alliance volunteers make more than 200 visits on Capitol Hill to advocate for increased research funding. TSC Natural History Database launched. Organization continues to expand 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. 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 six 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 six 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 begin 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, which is eventually approved by the FDA to treat infantile spasms. TS Alliance introduces 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, MD, PhD, 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 AfinitorÒ) designated to specifically treat SEGAs associated with TSC. TS Alliance offers 18 nation-wide Town Hall Meetings to educate constituents on a local basis. TS Alliance establishes TSC Drug Screening Program. H.P. Acthar Gel approved by FDA to treat infantile spasms. TS Alliance spends $1.4 million on TSC research. TSC Natural History Database enrollment reaches more than 1,000 participants at 15 U.S.-based TSC Clinics. TS Alliance introduces 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. A new TSC 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. 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 tenth 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 Consortium 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 its 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 Alliance 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 PeerReview Institute to offer CME course to educate physicians about new TSC Clinical Consensus Guidelines.
2014	TS Alliance hosts the very first World TSC Conference in Washington, DC, attracting almost 700 attendees from 44 states and 20 countries. TS Alliance initiates a TSC Biosample Repository to collect high-quality biosamples such as blood, DNA and tissues linked to detailed clinical data. TS Alliance of Israel becomes first-ever Global Alliance. 40th Anniversary Celebration held in New York, NY with an original play, Four Decades | One Community, performed on Broadway.
2015	National Institutes of Health and TS Alliance sponsor a workshop, “Unlocking Treatments for TSC: 2015 Strategic Plan,” to update research recommendations and priorities for the TSC field for the next 5-10 years. TS Alliance maintains its 4 Star Rating from Charity Navigator and earns the GreatNonProfits’ Top-Rated Award for the fourth year in a row. TS Alliance and Tuberous Sclerosis Association (UK) co-hosts the International TSC Research Conference: From Treatment to Prevention in Windsor, UK, attended by 261 researchers, clinicians, constituents and partners from 30 countries. The TSC Clinical Research Consortium publishes interim results for the EEG Biomarker Study in Pediatric Neurology, which shows that abnormalities in EEG of infants with TSC who have never had seizures are predictive of the risk of developing epilepsy. TS Alliance launches a new #IAMTSC campaign featuring a micro-website and public service announcements from Julianne Moore, Mo Collins, Kate Flannery, Chris Hawkey, Jim O’Heir and Alex Skuby.  The campaign ultimately garners $1.5 million in media placements. For the first time, TS Alliance partners with the Child Neurology Foundation to co-sponsor Infantile Spasms Awareness Week, December 1-7. TS Alliance introduces a unique 50K Research Challenge crowdfunding project, which lets the TSC community vote on an innovative research project to receive seed funding.
2016	The TS Alliance and The LAM Foundation jointly host Regional Conferences in Nashville, Seattle and Cleveland. The Clinical Research Consortium makes history with the PREVeNT clinical trial, the first-ever preventative epilepsy clinical trial in the United States. The TS Alliance introduces the TSC Preclinical Consortium with members from industry and academia to test the efficacy of candidate therapeutic drugs and advance the best to the clinical stage. TS Alliance announces new formal partnerships with TS Canada ST and TS Alliance of Mexico. The Engles Family Foundation on behalf of the Engles Collaborative Research Fund makes a significant $1.5 million gift to support the Biosample Repository and Preclinical Consortium.
2017	In June, the TS Alliance sponsors a groundbreaking Externally-Led Patient-Focused Drug Development Meeting on TSC and LAM with the Food and Drug Administration, culminating with a Voice of the Patient Report that communicated the TSC community’s needs and hopes to improve their daily lives. Three pharmaceutical companies join the Preclinical Consortium, bringing the total to six industry partners. The TSC Preclinical Research Consortium run ten studies, compared to four in 2016. The TSC Research Program at the Congressionally Directed Medical Research Program receives another $6 million appropriation, bringing the cumulative funding to $71 million since 2002, thanks to our successful grassroots efforts. The TS Alliance and The LAM Foundation partner once again to jointly sponsor the 2017 International Research Conference and TSC and LAM: Innovating through Partnerships, held in Washington, DC with more than 200 participants from 27 countries. The TS Alliance expands its Global Relations Program with the addition of the Hungarian Foundation for Tuberous Sclerosis.
2018	TS Alliance hosts its second World TSC Conference with 933 participants from 26 countries. The TS Alliance unveils a comprehensive five-year Research Business Plan with the goal to raise $56 million. Board approves a new Strategic Plan and Research Business Plan for 2019-2023. The organization once again expands its Global Relations Program via new formal partnerships with TS Alliance of India and TS Alliance Foundation in Thailand. AfinitorÒ DISPERZ is approved as the first adjunctive treatment in the United States for patients aged 2 years or older with TSC-associated partial-onset seizures.
2019	TS Alliance, in partnership with Tuberous Sclerosis Canada Sclérose Tubéreuse and TS Alliance of Mexico, presents 2019 International TSC Research Conference: Changing the Course of TSC in Toronto, ON. TS Alliance 45th Anniversary Gala scheduled for October in New York, NY, raising $1 million for the first time during an event. TS Alliance introduces several new tools to communicate better with the TSC community including podcasts, eNewsletter, videos and Facebook Live series. TS Alliance begins development of a new online educational platform called TSC Academy.
2020	The TS Alliance successfully pivoted its operations and programs to address the COVID-19 pandemic. The 2020 March on Capitol Hill to advocate for TSC research led to 216 signatures in the House, 35 in the Senate and an $8 million appropriation for TSC Research Program through the Congressionally Directed Medical Research Program at the Department of Defense. To address TSC-associated neuropsychiatric disorders (TAND), the TSC Alliance developed a series of informational webinars featuring hands-on practical tips especially pertinent during the pandemic. The TS Alliance offered more than 30 COVID-19 Webinars, Virtual Townhalls and Open Forums to address needs and answer questions of TSC families and individuals. During May, the TSC community raised unparalleled awareness by joining the #TSCstrong social media campaign and supporting the TSC Awareness Month of Caring fundraising effort. The 2020 TSC & LAM Virtual Conference Series was another huge success, featuring leading experts discussing cutting-edge research and clinical care for children and adults living with TSC and LAM. In our ongoing quest to better understand how TSC affects each person differently, the TSC community continued to advance TSC research by participating in clinical trials and the Natural History Database, including a pivotal COVID-19 study. The Biosample Repository also grew as we began to collect samples through mobile collection. The historic Step Forward to Cure TSC® National Virtual Walk-Run-Ride included a weekend of events, attracting more than 1,750 participants from all across the country who joined together to celebrate our community, raise crucially needed funds and spread awareness.
2021	Following almost two years of planning, the TS Alliance formally rebrands to become the TSC Alliance. TSC Alliance launches a new, easy-to-use online tool, TSC Navigator, to help guide individuals and families through the complexities of TSC across the lifespan, proactively manage their care and live their fullest lives. Updated 2021 International TSC Diagnostic Criteria and Surveillance and Management Recommendations released to reflect advances in knowledge and approvals of new therapies. The TSC Alliance ends with 2021 marking the organization’s most successful year in its history, including investing more in TSC research than ever before: $3.9 million. The TSC Alliance adds a TSC Self-Report Portal to its Natural History Database.
2022	The TSC Alliance and TSC International co-host the 2022 World TSC Conference in Dallas, TX, attracting almost 1,000 participants from across the globe. TSC Alliance introduces four newly updated Navigation Guides covering the lifespan of people with TSC. TSC Alliance partners with the Ramesh and Kalpana Bhatia Family Foundation on a new project to uncover biomarkers, test new treatments and connect researchers with families to better address TSC-associated neuropsychiatric disorders (TAND). The $2.5 million foundational gift is the largest single donation in the TSC Alliance’s history. The 20th Anniversary Comedy for a Cure raised $580,000, the most in its history. TSC Alliance reaches $10 million annual budget for the first time
2023	TSC Alliance begins new focus on reproductive and perinatal health. TSC Alliances launches SUDEP Quality Improvement Initiative to address its heightened risk in people with TSC who have drug-resistant epilepsy. The TSC Alliance for the first time sponsors a TAND Biomarkers Innovation Workshop. Journal of Neurodevelopmental Disorders publishes international consensus recommendations to guide the identification and treatment of TSC-associated neuropsychiatric disorders (TAND) The 2023 International TSC Research Conference attracts 256 attendees from 25 countries to set stage for future of TSC scientific breakthroughs. Results from the PREVeNT Clinical Trial are published in the Annals of Neurology. TSC community input via a wide-ranging online survey helps shape the organization’s new 2024-2028 Strategic Plan. TSC Alliance introduces new Community Regions/Collaborative Leadership Model to better serve constituents and to reimagine our volunteer program.