"I add my support to the work The Michelle Foundation is currently undertaking and trust that your efforts will ease the plight of children living with TSC worldwide."

N.R. Mandela

WE CANNOT HEAL WHAT WE DO NOT UNDERSTAND

The Michelle Foundation was established by the parents of Michelle, a young girl affected with Tuberous Sclerosis Complex (TSC), also known as the illness of Bourneville. The purpose of the Foundation is worldwide promotion and financial support for research into the genetic disease TSC.

March 5th 2009:
The Michelle Foundation provides grant to start a Dutch TSC expertise centre (see below)
Download the folder of the Michelle Foundation

last update: 5 june 2009

Hoofdsponsor:

PRESS STATEMENT MICHELLE FOUNDATION

21 November 2008

Grant provided for Dutch TSC expertise centre

The Michelle Foundation will provide a grant of € 60.000 for the opening of a Tuberous Sclerose Complex (TSC) expertise centre in het Erasmus MC - Sophia Kinderziekenhuis in Rotterdam, The Netherlands. in te Rotterdam. The grant is supported by our principle sponsor PricewaterhouseCoopers and will be evenly divided between 2008 and 2009.

This initiative is also supported by the TSC Dutch patient organisation Stichting Tubereuze Sclerosis Nederland (STSN). The STSN represents a significant share of the population in The Netherlands that deals with TSC.

The centre in Rotterdam will work closely with the Universitair Medisch Centrum (UMC) Utrecht (the TSC policlinic run by Dr.B.A.Zonnenberg and the Sylvia Tóth Centrum Wilhelmina Kinder Ziekenhuis (WKZ) run by Prof.Dr.O. van Nieuwenhuizen) and the national expertise team for TSC and behaviour. The combination will provide a powerful impuls to the care for children with TSC and also the scientific research in the field of TSC.

The illness TSC receives great international attention since the two genes responsible for causing TSC have been detented approximately 10 years ago, partly due to research in Rotterdam. TSC is a complex illness that affects many organs, and therefore medical specialties. Patients with this genetic disease can suffer from a diversified spectrum of symptoms, such as epilepsy, mental delay, tumours, abnormalities in the lungs, kidneys or hart.

The trend for improvement of care and research is cooperation, which TSC in a way requires (or forces by definition). This entails creating chances to force a breakthrough in medical research into the illness and the treatments. Researchers now need to use and combine the knowledge multiple specialities. A side effect is that this can also create new insights into diseases closely related to TSC, for instance cancer.

The multidisciplinairy approach for care and reseach will lead to an integrated treatment for patients with TSC. Rotterdam already had experience with setting up such a innovative care structure; namely in the field of Neurofibromatose. They are therefore well situated to extend their experience into the field of TSC.