Tuberous Sclerosis Alliance: September 2015

Tuberous Sclerosis Alliance: September 2015

Silver Spring, MD
Dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. This mission depends upon rapid, innovative, and collaborative medical research—basic research and applied research.

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 who shared the common bond of tuberous sclerosis complex. These goals are still driving the organization today. The TS Alliance’s 35 volunteer branches, known as Community Alliances, and their army of more than 2,000 volunteers, make progress in the fight against TSC possible.

The TS Alliance is a national voluntary health nonprofit dedicated to finding a cure for tuberous sclerosis complex (TSC), while improving the lives of those affected.  The organization provides support and information for individuals and families living with the disease, raises awareness, advocates for federal TSC research dollars, and funds and drives scientific breakthroughs. The vision of the TS Alliance is to bring about the day when no one has to endure the devastating effects of TSC.

 A major challenge faced by the research community is the stability of funding sources, shared Steven L. Roberds, Ph.D., chief scientific officer of the TS Alliance. “As dollars at the federal level are tightened, non-governmental dollars become even more critical for stability. We can strive to fund pieces of research that are critical to long-term success, and we can advocate on behalf of those impacted by TSC to encourage government to more responsibly fund and facilitate medical research,” he said.

In 2011, the TS Alliance created the Unlock the Cure campaign. “Unlock the Cure is a fundraising platform and focused strategic initiative to implement the next generation research program needed to move potential treatments from the lab (pre-clinical) to the TSC community (clinical trials) in a more expedited way,” explained Kari Luther Rosbeck, president and CEO of the TS Alliance.

During the campaign, $4.68 million was raised with the support of a matching challenge grant from the Harold Simmons Foundation. The TS Alliance provided seed funding, through Unlock the Cure, to its Clinical Research Network so that studies could begin more quickly and to fully fund study coordinators at five sites. The TS Alliance initial investment of approximately $350,000 leveraged more than $16 million in public funding. “Organizations such as ours can provide small amounts of funding for early, innovative ideas that may develop into larger projects that can be competitive for federal research support,” said Roberds.

Over the past 13 years, the TS Alliance has cultivated a passionate and committed grassroots community, primarily through the Community Alliances.  Community Alliances host educational and support meetings, increase awareness in the community, provide peer-to-peer support and are an integral part of organizational fundraising. 

Grassroots volunteers from around the country have assisted in securing annual appropriations from the Department of Defense’s Congressionally Directed Medical Research Program, which cumulatively accounts for $53 million in appropriations for the TSC Research Program. The TS Alliance continues to strengthen its network and foster partnerships with volunteers and organizations.

“As members of Research!America we are proud to join with fellow members in making these important resources for the future of research breakthroughs possible through collaborative advocacy efforts,” Rosbeck said.  “Research!America is a wonderful organization that allows a rare disease organization like ours to join with the voices of other nonprofit organizations, universities and industry in order to make a substantial difference.”

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Media Contacts

Tim Haynes
Senior Director of Communications 

If concerted, long-term investments in research are not made, America will lose an entire generation of young scientists.
Brenda Canine, PhD; McLaughlin Research Institute, Montana