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Each year, SWF promotes awareness of SWS during the month of May. Whether a patient or caregiver, this is our opportunity to showcase YOU through the victories and the struggles of living with Sturge-Weber Syndrome every single day.

This year we are focusing on those who care for the SWS patient - parents, siblings, doctors, nurses, relatives, even our faithful donors.  We CELEBRATE the sacrifices they make to ensure those with SWS have the same opportunities and quality of life as everyone else.

  • During May be sure to visit SWF’s various social media sites as we share stories of many of our members.
  • We encourage you to post photos of your own Month of Awareness endeavors on our pages. and personal pages. We’ll even have a Month of Awareness selfie frame you can down load and use!
  • Much of the nation's public events are limited, but you can still promote awareness with personal online fundraisers.  Consider participating in the SWF’s Million Miles for Sturge-Weber Syndrome Campaign (April 1 through June 30).  It’s easy to register, and can be done on you own by just counting your steps daily and asking others to support your endeavor.
  • SWF Clinical Care Centers are also making contributions to Month of Awareness with some great exercise and nutrition programs, for children and caregivers. Robert H. Lurie Children’s Hospital of Chicago has provided an extensive Children's Wellness and Weight Management Program to SWF.  You can view and download the program here or visit 
    This is a great program to get children involved in self-care and can be adapted to adult caregivers.

    Here is a great article about the Importance of Exercise for People with Disabilities, Click here

  • Hang up the 2021 Month of Awareness Poster at your office, local coffee shop, school bulletin board or window of your home.  Anywhere is a great place to share and grow awareness of SWS.

  • Consider supporting MYLA’S MISSION 5K WALK for STURGE-WEBER AWARENESS! Once again, Molly Speer and her family will be hosting their annual 5K Walk for Myla and SWS in Decatur County, IN, May 15th.  Although you may live else where,  you can impact the success of this fundraiser right where you are! For details on how to register, go to

Check back frequently during May for announcements and updates on what is happening during Month of Awareness and the progress being made with Million Miles!