The Megan Foundation began as the Usher Syndrome Foundation in 2008 when Megan Kennedy and her mother, Theresa Cacciatore, decided to change the lack of information and resources available to those with the disorder. Inspired by the determination and dedication of its founder, the foundation became known what it is today, The Megan Foundation. Since its inception, the foundation has donated over $100,000 to Usher syndrome research.
The foundation became a member of the Usher Syndrome Coalition in 2011. Like the The Megan Foundation, the Usher Syndrome Coalition was founded in 2008 by families determined to find answers for their children afflicted with Usher Syndrome. By joining forces, they are dedicated to helping families cope with Usher syndrome while working diligently to find a cure. The coalition counts a number of leading institutions and researchers among it’s members, being truly international in scope with member institutions from across the globe including some of the finest international organizations.