We are excited to embark on this new, rare journey. Together with families and researchers from around the world, we are hopeful to find a viable treatment for Salla disease! The S.T.A.R. foundation has been a remarkable start to the uncertain road that lies ahead, and we couldn’t be more honored to partner with these esteemed doctors and researchers!
When we received Ben’s diagnosis in September of 2017, we felt alone and frightened. Like most families in our situation, we immediately began to research our child’s diagnosis. In the case of Salla disease, information was pretty much non-existent. No research website, no family support, no doctors who had done viable work on such a rare, orphan disease. Hopelessness and despair didn’t even begin to scratch the surface of our emotions.
As we pioneer and forge ahead in finding a treatment for Salla, we are humbled by the generosity and kindness of those around us. You have surrounded our family in love and prayers, and you have given us a sense of purpose and hope as we journey through life’s uncertainties