We exist to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions. We support them with collaborative education and advocacy in tandem with translational research as we promote effective management and awareness. 

News & Events

No matter how old you are, what your musical taste is or whether or not you can read a note, there's never a wrong time to learn how to play an instrument.

Michelle Daoust was born with a birthmark which spans across her 75 per cent of her face, half her neck, her right arm and 75 per cent of her back. The administrative assistant, from Ontario, Canada, was diagnosed with Sturge-Weber Syndrome (SWS) at birth. The condition is a rare disorder characterized by the association of a facial birthmark, neurological abnormalities, and eye abnormalities such as glaucoma
At eight months old, it was discovered that SWS had caused glaucoma in her right eye, making her 80 per cent blind. She was also diagnosed with epilepsy . Growing up, she was regularly teased about her appearance. Her peers dubbed her 'tomato face' and often asked her if she had eaten a red Crayola crayon. Michelle, who tried to take her own life when she was 16, says she has now learned to embrace and love her birthmark. She encourages others to ask people about their birthmarks, rather than just staring at them.

So, do you want to embrace social networking to have a positive influence on the world? Here are some ideas for how to use social media to make a difference.

We are here for you! Contact us at swf@sturge-weber.org.