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:
Backing the first-ever preventative clinical trial for epilepsy in the United States.
Creating a Biosample Repository with more than 2,650 samples linked to clinical data in the Natural History Database.
Building a Preclinical Consortium to help move new treatment ideas toward clinical trials.
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:
Focusing research to better understand TSC and identify new treatments;
Altering the course of the disease and improving quality of life 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.
"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."
Natural History Database and Biosample Repository: TSC affects everyone differently. To understand which drugs 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.
Clinical Research: Clinical studies require extensive planning and collaboration. The TSC Alliance aims to alleviate the obstacles that stand in the way of efficient, effective and safe clinical trials.
Preclinical Consortium: This project fills a critical research gap for standardized, rigorous testing of potential new TSC therapies prior to clinical trials. The innovative platform provides industry and academic members access to reproducible preclinical models and outcome measures, providing an unbiased platform for this critical stage in drug development. The Preclinical Consortium removes risks associated with developing new drugs and will encourage more companies to focus on treatments for the TSC community.
Innovative Research: This effort's goal is to award more research grants annually, forge stronger connections between the top researchers around the world and bring stakeholders together at Innovation Workshops.
"To achieve these ambitious research goals, we're counting on continued investment, collaboration and unwavering commitment of our community," Rosbeck continued. "The 50 Forward Fund will lead to research outcomes that will truly make a meaningful, positive impact on the lives of all those touched by TSC."
To learn more about the 50 Forward Fund, view the campaign video and donate online, visit tscalliance.org/50-forward-fund today.
About tuberous sclerosis complex
Tuberous sclerosis complex (TSC) is a rare genetic disease that TSC causes tumors to grow in different organs and can impair their function, primarily the brain, heart, kidneys, skin and lungs. The disease is the leading genetic cause of epilepsy, including infantile spasms, and can also cause cognitive, behavioral and psychiatric disabilities; aggressive behaviors; and more. A strong correlation also exists between TSC and autism—an estimated 40-50% of individuals with TSC have autism spectrum disorder. TSC is a linchpin disease, meaning its genetic pathway also plays a role in other diseases and disorders. Advancements in TSC research may lead to a better understanding of autism, epilepsy, traumatic brain injury, diabetes and cancer—diseases that affect more than 65 million people in the United States alone.
About the TSC Alliance
The TSC Alliance improves quality of life for everyone affected by tuberous sclerosis complex by catalyzing new treatments, driving research toward a cure and expanding access to lifelong support. For more information, visit
tscalliance.org.
Contact
Jaye Isham
Chief Outreach Officer
TSC Alliance
(301) 562-9890
[email protected]
SOURCE TSC Alliance
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