Running for TSC

Kia Ora,

My name is Nic van der Vlerk and I’m running my first marathon (Rotorua Marathon, 8th May 2021) to help raise awareness and funding for a disease close to my heart- Tuberous Sclerosis Complex (TSC).

TSC is a rare multi System autosomal dominant genetic disease that causes non-cancerous tumours to grow in the brain and on other vital organs such as the kidneys, heart, liver, eyes, lungs and skin. A combination of symptoms may include seizures, intellectual disability, developmental delay, behavioral problems, skin abnormalities, lung disease, and kidney disease. The benign tumours can however turn malignant in nature. TSC can originate genetically (hereditary) or at random with no genetic links. It can affect the individual immensely or they may live a relatively ‘normal’ life.

My mum suffered from TSC and passed away in 2018 with complications linked to the disease. Losing mum turned my world upside down. To cope with the loss I started running. I was an anxious mess and needed to have control where I had lost control.

There is no cure for TSC and many people have never heard of it. I am running in my mums honour, my uncle, myself and all other TSC warriors and their whānau!

Thank you for taking the time to read ☺️