Our Founding Story

It is hard to imagine anything more devastating than having your child diagnosed with a life-threatening disease.

In 1978, 16-year-old Karen MacInnes was terminally ill with a rare genetic disorder, Lafora’s disease. Her parents desperately wanted her to be able to spend her last months at home with friends and family. Despite the prohibitive costs of Karen’s care, they brought her home from the hospital. Sheila Petersen, a family friend, appealed to the community and began a fundraising campaign to help pay the mounting bills for Karen’s care and comfort at home.

At the end of Karen’s life, her family expressed their wish that Sheila continue helping to make life easier for other catastrophically ill children and their families.

Thus, the organization that bears Karen’s name was born.

Sheila Petersen founded Friends of Karen in 1978.

Karen MacInnes for whom Friends of Karen is named.