Sturge-Weber syndrome can become debilitating due to complications and the progressive nature of the disease, which can lead to poor quality of life and possible death from the seizures.

 

Sturge-Weber syndrome is a rare disease; therefore, it is not widely studied, and there is little incentive for research and development of a cure.

 

We are an IRC 501(c)(3) nonprofit, tax-exempt, nonoperating, private foundation dedicated to Xavier, who was born with bilateral Sturge-Weber syndrome. We strive to raise awareness and monies to support Sturge-Weber syndrome research. Our board members work on a voluntary basis, and we keep overhead very low to ensure most of the monies raised goes directly to research; all while maintaining full financial transparency through Guidestar.  The proceeds from our fundraisers and donations support research efforts at the Hunter Nelson Sturge-Weber Center, Kennedy Krieger Institute, which in turn supports research efforts worldwide. This research positively impacts thousands of patients looking for better treatments and a cure.  

 

Thank you for supporting our cause and creating hope for all who suffer from Sturge-Weber syndrome.

     

  

 

 

 

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