About Us
The Haley’s Heroes Foundation was created to increase awareness about and raise funds for research to find a cure for Batten Disease, specifically CLN1. In October of 2017, our Haley was diagnosed with the CLN1 version of Batten Disease. Our greatest fear was that Haley would go blind. Today we would consider that a blessing. Batten Disease is a rare inherited disorder of the nervous system. Today there is no known treatment or cure. Those affected suffer from progressive neurological impairment that leads to blindness, seizures, loss of motor skills, speech, and, ultimately, life. Haley is just eight years old. She lives her life as a song. She dances and sings when others might just watch. Her world is one of glitter, unicorns and magic. Batten Disease will steal that from her. We cannot just stand by and watch the song disappear from her soul without trying to do something. The saying “it takes a village” has never been more true. Our hope is also that any progress made on one genetic disorder will help those coping with other genetic disorders.