Spotlight on TS Alliance

New $1 Million Gift Expands TSC Biosample Collection Ability Thanks to an extraordinary $1 million investment by Lorne and Heidi Waxlax, our goal to add 1,500 new blood samples to the TSC Biosample Repository by 2023 is now within reach! The new Waxlax Biosample Collection Initiative will support the TS Alliance’s partnership with Phlebotek, a mobile phlebotomy company, to enable people to donate samples regardless of where they live in the US and whether they are seen at a TSC Clinic. The increased convenience afforded by at-home collection will broaden the diversity of biosamples available for study with far-reaching results, including prediction of TSC manifestations, facilitation of preventative treatments and identification of targets for drug development.

As you probably already know, TSC affects each individual differently. To understand which drugs are needed and will be most effective for each individual, researchers need biosamples, clinical data and patient-reported outcomes. These require efficient collection processes, standardized analysis protocols and robust data management. Since 2015, the Biosample Repository, maintained at The Van Andle Research Institute in Grand Rapids, MI, has housed human biological materials such as blood, DNA and tissues linked to detailed clinical data in the TSC Natural History Database. High-quality biosamples and their associated clinical data will enable researchers to discover biomarkers, establish human cell lines or tissue arrays for drug testing, and search for clues to understand why TSC is so different from person to person.

But to increase our knowledge, we need more samples, and this new funding will help us rapidly expand collection efforts.

When asked about their motivation to invest in this research, Lorne and Heidi said, “We believe everyone should give what they can to help do something great. For us the great thing is the research that will develop a cure for TSC. We believe the TS Alliance can do it if we all help them.”

Waxlax Biosample Collection Initiative funds also support the addition of TS Alliance staff to drive the project, including Gabrielle V. Rushing, PhD, our new Associate Director of Research. “The TS Alliance is incredibly grateful to Lorne and Heidi Waxlax for supporting this important initiative,” Gabrielle shared. “Connecting the Biosample Repository with medical information in the TSC Natural History Database is critical to provide our academic and industry research partners with the best resources to study why TSC is highly variable across individuals. The use of human TSC samples may lead to the identification of new drug targets or biomarkers that could enable the prediction of an individual’s risk of developing specific TSC manifestations and the implementation of preventative interventions. It’s exciting to partner with Phlebotek, because this service will allow us to collect blood samples from participants in the comfort of their own homes.”

About the TS Alliance

Our Story

The challenge…the promise… and the critical role you can play: A message from TS Alliance President and CEO Kari Luther Rosbeck.

Our Mission

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

Our story is one of determination and devotion—an unyielding determination to help bring about better treatments and a cure for tuberous sclerosis complex (TSC) and an intense devotion to all those who share this battle with us. Individuals and families. Health care professionals. Medical researchers. Friends and family. Everyone who has a stake in this fight can multiply his or her impact by linking arms and working together to bring this disease to the brink of a breakthrough.

The Tuberous Sclerosis Alliance (TS Alliance) was founded on the core belief that community is a sustaining strength in the face of difficult challenges.  In 1974 four mothers who shared the common bond of tuberous sclerosis complex came together to provide fellowship, generate awareness, pursue more knowledge and offer hope to each other. That was the birth of the Tuberous Sclerosis Alliance, and the spirit and intention of those founders permeate everything we do to this day.

Tuberous Sclerosis Alliance

Historic Timeline

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.

1983: Ann Landers writes a column about TSC, which triggers 1,500 phone calls and 650 letters to NTSA.

1984: NTSA celebrates 10th anniversary and funds first research grant of $5,800 to Dr. Ken Dumars, University of California, Irvine.

1986: First TSC clinic opens at Wyler’s Children’s Hospital in Chicago.

1987: TSC gene localized to chromosome 9.

1988: NTSA relocates to Washington, D.C. area. President Ronald Reagan signs resolution declaring May 8-15 as National Tuberous Sclerosis Awareness Week.

1992: Second TSC gene is linked to a region on chromosome 16. NTSA testifies for the first time before Congress about increased research funding for TSC.

1993: TSC2 gene on chromosome 16 is identified by European consortium.

1997: NTSA launches first website. TSC1 gene on chromosome 9 is identified by International Consortium.

1998: NTSA introduces formal research program and funds $886,741 in research grant awards. Historic TSC Consensus Conference held in Annapolis, MD.

1999: NTSA holds first National Family Conference in Washington, DC.

2000: NTSA adopts a new logo and begins doing business as the Tuberous Sclerosis Alliance (TS Alliance).

2001:TS Alliance obtains support from Congress to start TSC Program in Department of Defense Congressionally Directed Medical Research Program.

2002: TS Alliance partners with NIH to hold a scientific research conference, “New Perspectives in Tuberous Sclerosis Research,” to produce a comprehensive research plan for TSC.  TS Alliance awards $1 million in funding to laboratories within Harvard Medical School, Brigham and Women’s Hospital and Massachusetts General Hospital.

2005: 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.  Organization also begins developing the TSC Natural History Database.

2008: Rapamycin (Sirolimus) is shown to be effective in preventing and treating seizures 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.

2009: 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.

2010: FDA approves the first drug (called Afinitor) designated to specifically treat SEGAs associated with TSC. TSC Natural History Database enrollment reaches more than 1,000 participants at 15 U.S.-based TSC Clinics.

2012: 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.  TS Alliance leads and participates in first world-wide TSC Global Awareness Day, held May 15.

2014: TS Alliance initiates a TSC Biosample Repository housed at Van Andel Institute in Grand Rapids, MI, to collect high-quality biosamples such as blood, DNA, and tissues linked to detailed clinical data to help researchers to understand why TSC is so different from person to person. The 2014 World TSC Conference, held in Washington, DC, attracts almost 700 participants from 44 states and 20 countries.

2015: The National Institutes of Health and TS Alliance sponsored a workshop in March entitled “Unlocking Treatments for TSC: 2015 Strategic Plan,” bringing together 82 participants to update research recommendations and priorities for the TSC field for the next 5 to 10 years.

2016: The TS Alliance and The LAM Foundation jointly hosted Regional Conferences in Nashville, Seattle and Cleveland. The first-ever preventative epilepsy clinical trial in the United States launched, and the TS Alliance introduced 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. The TS Alliance announced new global partnerships with TS Canada ST, the TS Alliance of Mexico and the TS Alliance Foundation in Thailand. In addition, the Engles Family Foundation on behalf of Engles Collaborative Research Fund made 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 10 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 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 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.