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FAQ

  • What causes Sturge-Weber Syndrome?
    SWS gene mutations occur sporadically (for no clear reason). There is no proven way to prevent Sturge-Weber syndrome.
  • What is Sturge-Weber Syndrome?
    Sturge-Weber syndrome (SWS) is a neurological (nervous system) condition. It is present at birth. SWS causes blood vessels to grow too much, forming growths called angiomas. These angiomas can lead to a port-wine birthmark on the face. They can also grow in the brain and cause symptoms such as seizures.
  • How rare is Sturge-Weber Syndrome?
    One estimate places the incidence at 1 in 20,000-50,000 live births. Approximately 3 in 1,000 babies are born with a port-wine birthmark, but only approximately 6% of individuals with a port-wine birthmark on the face develop the neurological abnormalities associated with SWS.
  • What is the main focus of Myla's Mission for Sturge-Weber Awareness?
    A: Myla's Mission for Sturge-Weber Awareness is a fundraising organization dedicated to raising awareness and funds for research and treatment of Sturge-Weber Syndrome. This rare neurological condition affects the capillaries in the brain and skin, causing seizures, developmental delays, and physical impairments. Myla, the inspirational little girl behind the organization, was diagnosed with Sturge-Weber Syndrome at just 8 months old and has since faced countless challenges. Myla's Mission aims to support Myla and others like her by funding research for better treatments. By supporting Myla's Mission, we can all help make a difference in the lives of those living with Sturge-Weber Syndrome.
  • How can I help Myla?
    Great question! We would love for you to join us and Myla each third Saturday in May to help raise funds for the Sturge-Weber Foundation!!
  • What is Myla's care team plan?
    Myla's treatments over the past 7 years have included a plethora of different medicines, diets, and regimens to control her hundreds of seizures. Her care team has kept an open mind to different treatment possibilities, but they have yet to figure out a plan to keep her siezures from happening. We continue to work with her team each month, and are hopeful that one day we can say Myla is seizure free! Until then, she continues to live her best life - being a vibrant and spunky 7 year old!
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