The month of May is recognized as Tuberous Sclerosis Complex Awareness Month, a time for helping to spread awareness about tuberous sclerosis complex (TSC) among the general public and in the medical community. This year the nonprofit Tuberous Sclerosis Alliance is hoping to engage with people who have never even heard of the disease as well as with members of their own rare disease community.
About Tuberous Sclerosis Complex (TSC)
Tuberous sclerosis complex (TSC) is a rare genetic disease that causes a variety of symptoms. It is most distinguished by the appearance of non-cancerous tumors, which grow in the brain, lungs, eyes, liver, skin, and other organs. The disease is triggered by mutations affecting the TSC1 or TSC2 genes, which code for proteins that normally suppress the appearance of tumors. The disease can inflict a variety of symptoms, such as intellectual disability, skin changes, disease affecting the lungs or kidneys, behavioral abnormalities, developmental delays, autism, and seizures. The broad systemic impacts of the disease require frequent management and monitoring of tumors; a variety of specialist expertise may be necessary. Outcomes vary, but with good management most patients have a normal life expectancy. Many patients with mild symptoms remain undiagnosed. To learn more about tuberous sclerosis complex, click here.
Step Forward for a Cure
The Tuberous Sclerosis Alliance is hosting a fundraiser on May 15 called Step Forward for a Cure. This is the largest event in the US that is dedicated to finding a cure for tuberous sclerosis complex and spreading awareness. This is a global walk/run/ride event that will be held virtually. The organization has run this event every year for the past 19 years, helping to raise millions of dollars for disease research and advocacy. Click here to get signed up. May 15 also coincides with Global TSC Awareness Day.
The Tuberous Sclerosis Alliance also has a collection of valuable educational resources that can help patients and their families. They have been conducting an ongoing series of webinars throughout the pandemic and have recordings of many of them, as well as of their conferences. Click here to check them out.