Our sons Will and Joseph have a lot in common. They both love a good laugh, they adore their little sisters, and they inspire smiles whenever they enter a room. However, they also struggle with the challenges of facing and fighting a rare and terminal pediatric neurodegenerative disease. Will has Surf1 syndrome, and Joseph has Batten disease. Despite the odds, Will and Joseph are making big changes in the world. Their journeys have inspired our commitment to change the world of rare childhood disease for the better.
We founded the Rare Village Foundation because as parents we know first-hand the struggles of rare disease life, as well as the power of hope, community, and hard work. We want every rare parent or family confronted with a terminal diagnosis to know that they are not alone.