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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