Fundraising campaign fuels research to change the course of tuberous sclerosis
SILVER SPRING, Md. , Oct. 26, 2024 /PRNewswire/ — Last night at the organization’s 50th Anniversary Gala in New York City, TSC Alliance® unveiled a major fundraising campaign called the 50 Forward Fund. announced the stages. The initiative 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 people worldwide. To date, the campaign has raised more than $18.5 million.
TSC Alliance Logo (PRNewsfoto/TSC Alliance)
“The 50 Forward Fund builds on the momentum we have built since our founding as we ambitiously look forward to a future where everyone affected by TSC can live their fullest lives,” said TSC Alliance President. said Kari Luther Rosbeck, CEO and Chief Executive Officer. “The TSC Alliance is committed to furthering research to produce meaningful outcomes for people living with TSC and their families, and the significant investment in TSC research through this campaign will help us achieve this vision. It will be helpful.”
Since 1984, the organization has provided more than $37 million in cumulative funding for TSC research and leveraged $505 million in additional federal funding. Previous research results include:
Supporting the first epilepsy prevention clinical trial in the United States.
Create a biological sample repository containing over 2,650 samples linked to clinical data in the Natural History Database.
Build preclinical consortia to advance new treatment ideas toward clinical trials.
Funded basic research and ultimately contributed to FDA approval of three TSC-specific drugs.
The 50 Forward Fund is the largest research initiative in TSC Alliance’s 50-year history. It was designed as part of the organization’s research enterprise plan to guide the research activities of TSC individuals with the following goals:
We will focus on research to better understand TSC and identify new treatments.
Altering the course of disease and improving quality of life through prenatal diagnosis and preventive treatment. and
We educate healthcare professionals to achieve faster diagnosis and better treatment in line with evidence-based standards of care.
“Funding from the 50 Forward campaign will help TSC Alliance expand research investments in four key areas,” explained Chief Scientific Officer Dr. Steven L. Roberds. “These include natural history databases and biological sample repositories, clinical research initiatives, preclinical consortia, and innovative research grant programs.”
story continues
Natural history databases and biological sample repositories: TSC affects people differently. To understand which drugs are most effective for each individual, researchers need biological samples, clinical data, and patient-reported outcomes. These require efficient collection processes, standardized analysis protocols, and robust data management.
Clinical research: Clinical research requires extensive planning and collaboration. The TSC Alliance aims to reduce barriers to efficient, effective and safe clinical trials.
Preclinical Consortium: This project fills a critical research gap for standardized and rigorous testing of potential new TSC treatments prior to clinical trials. This innovative platform provides industry and academic members with access to reproducible preclinical models and outcome measurements, providing an unbiased platform for this critical stage of drug development. Preclinical consortiums remove the risks associated with new drug development and encourage more companies to focus on treating the TSC community.
Innovative research: The goal of this initiative is to award more research grants each year, build stronger connections between top researchers around the world, and bring stakeholders together for innovation workshops.
“We count on the community’s continued investment, collaboration, and unwavering commitment to achieving these ambitious research goals,” Rozbeck continued. “The 50 Forward Fund will lead to research results that will have a truly meaningful and positive impact on the lives of all those affected by TSC.”
Learn more about the 50 Forward Fund, watch the campaign video and donate online. Visit tscalliance.org/50-forward-fund today.
About tuberous sclerosis
Tuberous sclerosis complex (TSC) is a rare genetic disease in which TSC causes tumor growth in various organs and can impair the function of organs, mainly the brain, heart, kidneys, skin, and lungs. . This disease is the main genetic cause of epilepsy, including infantile spasms, and can also cause cognitive, behavioral, and psychiatric disorders. aggressive behavior. And so on. There is also a strong correlation between TSC and autism, with an estimated 40-50% of TSC patients having an autism spectrum disorder. TSC is an important disease, meaning that its genetic pathways are also involved in other diseases and disorders. Advances in TSC research could lead to a better understanding of autism, epilepsy, traumatic brain injury, diabetes, and cancer, which affect more than 65 million people in the United States alone.
About TSC Alliance
The TSC Alliance improves the quality of life for all people affected by tuberous sclerosis complex by promoting new treatments, advancing research toward a cure, and expanding access to lifelong support. improve. For more information, visit tscalliance.org.
contact
Jay Isham
Chief Outreach Officer
TSC Alliance
(301) 562-9890
jishham@tscalliance.org
Sision
View original content to download multimedia: https://www.prnewswire.com/news-releases/tsc-alliance-announces-public-launch-of-its-50-forward-fund- 302282147.html
Source TSC Alliance
