The Tuberous Sclerosis Association (TSA) is delighted that the drug Votubia® (Everolimus) was launched in the UK today, to provide a treatment option for people with Tuberous Sclerosis Complex (TSC) who have growing non-malignant brain tumours which are not suitable for removal by surgery.

Everolimus, which is a prescription-only medicine and may be taken as a once daily pill, has been shown to reduce the size of a certain tumour -subependymal giant cell astrocytoma or SEGA- which is associated with TSC. As the first and only licensed pharmacological treatment so far proven to directly treat SEGAs associated with TSC, it is a significant advance for people in the UK with this condition.

Chris Kingswood, TSA Head of Research Strategy commented:

“For a long time there has been a desperate need for a useful alternative licensed treatment to invasive brain surgery. Everolimus is the first licensed product we can offer patients to attack the cause of their debilitating condition; it works by blocking a protein that acts as an important regulator of tumour cell growth. “

The news was announced to the scientific community at the International TSC Research Conference hosted by the TSA last week in Belfast at which leading medical researchers from around the world were gathered to discuss the latest exciting developments in treating TSC.  At the conference delegates heard the latest news from various clinical trials ongoing across the world following recent scientific breakthroughs. By bringing together world leaders in the field, the Tuberous Sclerosis Association is confident  that the conference will continue its work of stimulating further research and speed up the day when treatment choices are readily available.

The Tuberous Sclerosis Association has played an integral part in years of collaborative research which has taken us from a point of minimal understanding and unknown prospects for people with TSC to the present exciting times when medical research across the globe is capitalising on the considerable advances in our knowledge of TSC and how to treat it. We are delighted that Votubia® will offer some people with TSC another option.

For more information please contact Jane Cox, Head of Research