Fundraising campaign will fuel research to change the course of tuberous sclerosis complex
SILVER SPRING, Md., Oct. 26, 2024 /PRNewswire/ — Last night during the organization’s 50th Anniversary Gala in New York City, the TSC Alliance® announced the public phase of a major fundraising campaign called the 50 Forward Fund. The effort aims to raise $40 million for research into tuberous sclerosis complex (TSC), a rare disease affecting 50,000 in the United States and 1 million worldwide. To date, the campaign has raised more than $18.5 million.
“The 50 Forward Fund bolsters the momentum we’ve built since our founding while ambitiously looking forward to a future where everyone affected by TSC can live their fullest lives,” said Kari Luther Rosbeck, TSC Alliance President & CEO. “The TSC Alliance is committed to further catalyzing research to create meaningful outcomes for people living with TSC and their families, and major investments in TSC research through this campaign will help us achieve this vision.”
Since 1984, the organization has cumulatively funded more than $37 million in TSC research and leveraged $505 million in additional Federal funding. Research accomplishments to date include:
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Backing the first-ever preventative clinical trial for epilepsy in the United States.
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Creating a Biosample Repository with more than 2,650 samples linked to clinical data in the Natural History Database.
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Building a Preclinical Consortium to help move new treatment ideas toward clinical trials.
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Funding basic research that ultimately contributed to FDA approval of three drugs specifically for TSC.
The 50 Forward Fund is the TSC Alliance’s largest research initiative in its 50-year history. It was designed as part of the organization’s Research Business Plan to guide research efforts for TSC individuals with the following goals:
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Focusing research to better understand TSC and identify new treatments;
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Altering the course of the disease and improving quality of life through prenatal diagnoses and preventative treatments; and
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Educating medical professionals to achieve more rapid diagnosis and better treatment aligned with evidence-based standards of care.
“Funding from the 50 Forward campaign will help the TSC Alliance expand our research investment in four key areas,” explained Steven L. Roberds, PhD, Chief Scientific Officer. “These include our Natural History Database and Biosample Repository, Clinical Research efforts, Preclinical Consortium and Innovative Research grants program.”