SILVER SPRING, Md., Jan. 26, 2024 /PRNewswire/ — Throughout 2024, the TSC Alliance will observe its 50th anniversary. To kick off the year-long celebration, the organization recently released new Vision and Mission Statements and unveiled a newly redesigned website.
Tuberous sclerosis complex (TSC) is a rare genetic disease that causes tumors to grow in different organs and can impair their function, primarily the brain, heart, kidneys, skin, eyes and lungs. Changes in the brain caused by TSC have the biggest impact on quality of life—from seizures and developmental delays to intellectual disabilities, behavioral challenges and autism. In fact, TSC is the leading genetic cause of epilepsy, including infantile spasms. A strong correlation also exists between TSC and autism—an estimated 40-50% of individuals with TSC have autism spectrum disorder.
“Since our founding by four moms in 1974, the TSC Alliance has become a source of hope and support for people affected by tuberous sclerosis complex or TSC,” said Kari Luther Rosbeck, President & CEO. “We spent much of 2023 working with board members, key staff and TSC community members to update our Vision and Mission Statements to better reflect our current goals and objectives as outlined in our new 2024-2028 Strategic Plan.”
The organization’s new Vision Statement is to create a future where everyone with TSC has what they need to live their fullest lives. The new Mission Statement is: 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.
The TSC Alliance also spent much of the past two years working on redesigning its website at tscalliance.org to better serve site visitors including people with TSC and their caregivers, healthcare professionals, researchers and other supporters. The project was managed by Dan Klein, Director, Digital Platforms.
“The redesigned site was built with the TSC community in mind, and they were crucial partners in developing the new layout and content,” explained Klein. “The site’s updated design and navigation options make it easier for visitors to find what they are looking for and to better integrate all the resources the TSC Alliance offers.”
The website redesign was made possible by sponsorships from Jazz Pharmaceuticals and Nobelpharma America among other sponsors.
The TSC Alliance will continue to mark highlights from its five decades of service throughout the year, including at the upcoming Comedy for a Cure® on April 14 in Los Angeles, its Step Forward to Cure TSC® walk series in April and May and a 50th Anniversary Gala in New York City on October 25.
About the TSC Alliance
The TSC Alliance is an internationally recognized nonprofit that does everything it takes to improve the lives of people with TSC. It drives research, improves quality care, works to increase access and advocates for all affected by the disease. For more information, visit tscalliance.org.
Contact
Jaye Isham
Chief Outreach Officer
TSC Alliance
(301) 562-9890 | [email protected]
SOURCE TSC Alliance
