Our Founding Story
Friends of Karen began with an act of kindness.
In 1978, 16-year-old Karen MacInnes was terminally ill with Lafora disease, a rare genetic disorder. She’d been in a New York City hospital for almost a year, and her parents were traveling 110 miles daily between their Purdys, NY home and the hospital to be with her. Karen wanted to spend her remaining time at home surrounded by those she loved. Despite the overwhelming challenges they faced for her care, her parents brought Karen home.
Sheila Petersen, a family friend, appealed to the community about the plight of Karen and her family. Friends and neighbors gave generously to help pay the mounting bills for the ‘round-the-clock care Karen needed during the last 11 months of her life.
After Karen died, her family expressed their wish that Sheila continue to help other families with a catastrophically ill child. Sheila named her effort Friends of Karen, and used the remaining funds to help another child, and then another…Today, Friends of Karen helps hundreds of ill children and their families every month.