TSC Alliance® Announces Public Launch of Its 50 Forward Fund
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SILVER SPRING, Md., Oct. 26, 2024 ~ During the TSC Alliance's 50th Anniversary Gala in New York City last night, the organization made a major announcement. The public phase of their fundraising campaign, called the 50 Forward Fund, was officially launched. This campaign aims to raise $40 million for research into tuberous sclerosis complex (TSC), a rare disease that affects 50,000 people in the United States and 1 million worldwide. So far, the campaign has already raised an impressive $18.5 million.

Kari Luther Rosbeck, President and CEO of the TSC Alliance, expressed her excitement about the 50 Forward Fund and its potential impact on those affected by TSC. "The 50 Forward Fund builds upon the momentum we have created since our founding and looks towards a future where individuals with TSC can live their lives to the fullest," she stated. "The TSC Alliance is dedicated to driving research forward to achieve meaningful outcomes for those living with TSC and their families. The significant investments in TSC research through this campaign will help us achieve this vision."

Since its establishment in 1984, the organization has cumulatively funded over $37 million in TSC research and leveraged an additional $505 million in Federal funding. These efforts have resulted in significant accomplishments such as supporting the first-ever preventative clinical trial for epilepsy in the United States, creating a Biosample Repository with over 2,650 samples linked to clinical data, establishing a Preclinical Consortium to advance new treatment ideas towards clinical trials, and funding basic research that contributed to FDA approval of three drugs specifically for TSC.

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The 50 Forward Fund is the largest research initiative in the organization's 50-year history and was developed as part of their Research Business Plan with specific goals for individuals with TSC. These goals include focusing on research to better understand TSC and identify new treatments, altering the course of the disease through prenatal diagnoses and preventative treatments, and educating medical professionals to achieve more rapid diagnosis and better treatment aligned with evidence-based standards of care.

Steven L. Roberds, PhD, Chief Scientific Officer of the TSC Alliance, explained the four key areas that will benefit from funding through the 50 Forward campaign. These include the Natural History Database and Biosample Repository, Clinical Research efforts, Preclinical Consortium, and Innovative Research grants program.

The Natural History Database and Biosample Repository are crucial for understanding how TSC affects individuals differently and identifying effective treatments. To achieve this, researchers need biosamples, clinical data, and patient-reported outcomes. The TSC Alliance aims to streamline the collection process, standardize analysis protocols, and improve data management.

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Efficient planning and collaboration are essential for successful clinical studies. The TSC Alliance is committed to removing obstacles that hinder efficient, effective, and safe clinical trials through their Clinical Research efforts.

The Preclinical Consortium fills a critical research gap by providing standardized testing of potential new TSC therapies before they enter clinical trials. This platform offers industry and academic members access to reproducible preclinical models and outcome measures, reducing risks associated with developing new drugs. This will encourage more companies to focus on treatments for the TSC community.

The Innovative Research program aims to award more research grants annually while fostering stronger connections between top researchers worldwide through Innovation Workshops.

Rosbeck emphasized that achieving these ambitious research goals will require continued investment, collaboration, and unwavering commitment from the community. She believes that the 50 Forward Fund will lead to significant research outcomes that will positively impact the lives of all those affected by TSC.

To learn more about the 50 Forward Fund or make a donation online, visit tscalliance.org/50-forward-fund today.

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