ThinkGenetic is honored to partner with many incredible organizations, each with their own stories, struggles and triumphs. This month, we are taking a moment to highlight the work and rebranding of one of our newest Advocacy Alliance Program member, the TSC Alliance.
A New Identity for a New Era
“The TSC Alliance is incredibly grateful to join ThinkGenetic’s Advocacy Alliance Program,” says Kari Luther Rosbeck, President & CEO. “Since TSC is a rare genetic disease that too often goes undiagnosed, we are pleased to work with ThinkGenetic to help increase awareness of the disease so we can help ensure people with TSC are able to live their fullest lives.”
The TSC Alliance, previously known as the TS Alliance, is a respected nonprofit organization aimed at improving the lives of individuals with TSC. They collaborate directly with the TSC community to fund and advance TSC research, including funding investigators, maintaining a natural history database, organizing conferences, producing a research-focused e-newsletter, and promoting collaborative research through a preclinical consortium. The TSC Alliance also works to improve access to care in a variety of areas including recognition of a network of TSC clinics for comprehensive care, an Educator Mentor Program, and their own educational programs. They increase community empowerment and advocacy by raising awareness of the condition at local, national and international levels. For more information about the TSC Alliance and their vast resource library visit tscalliance.org.
What began as a grassroots organization has grown to be an internationally respected leader in the rare disease space. The TSC Alliance recently underwent a rebranding from their previous name, the TS Alliance. This was done to mirror how the condition is known in the community and to represent a new era for their organization. To learn more about their rebranding efforts, visit tscalliance.org/about-us/.
“We have been so excited to watch as the TSC Alliance has expanded their advocacy, education, and support offerings to reach all patients on the TSC spectrum” says ThinkGenetic Chief Genetic Officer Dawn Laney. “ThinkGenetic fully supports our partner in their rebranding which reflects their hard work.”
What is Tuberous Sclerosis (TSC)?
Tuberous sclerosis complex (TSC) is a rare genetic disease, affecting approximately one million individuals worldwide. TSC causes the formation of benign (non-cancerous) tumors throughout the body. The most common places for these tumors to present include the brain, eyes, heart, kidneys, skin and lungs. Although these tumors are benign, they can cause serious health concerns as they grow such as (but not limited to) seizures, intellectual disability, developmental delay, kidney failure, lymphangioleiomyomatosis (LAM), and irregular heartbeat. TSC also causes skin findings such as patches of very light-colored skin, areas of raised and thickened skin, and growths under the nails. TSC is a highly variable condition, meaning affected individuals can present with different features, even in the same family.
Please join us in thanking the TSC Alliance for their hard work and dedication to the community!
ThinkGenetic enters into Advocacy Alliance Program agreements with organizations, support groups and charities to share information, increase public awareness of genetic conditions and provide trustworthy resources to those living with or caring for someone with a genetic disorder. Learn more and view current partners at our Advocacy Alliance Program page or email firstname.lastname@example.org for information about enrollment in the program.
- TSC Alliance. (2021, August 16). https://www.tscalliance.org/.
- Overview: What is tuberous sclerosis? ThinkGenetic. (n.d.). https://www.thinkgenetic.com/diseases/tuberous-sclerosis.
About Jessica Dronen, MS, LCGC. Jessica is a Genetic Diseases Research and Information Specialist for ThinkGenetic, Inc. She received her Master of Science in the field of Genetic Counseling at the University of Oklahoma Health Sciences Center in 2016. She has worked with both pediatric and adult patients in a variety of areas. Away from work Jessica enjoys reading memoirs, making music and spending time outside with her family.