Inspiring Woman on a Mission: Lori Butterworth

One day several years ago, Lori Butterworth came home from work to an answering machine full of anxious, heartbreaking messages about Jacob, the young son of a friend. He had been diagnosed with cancer. He and his mom, Angel, were at the hospital.

Lori rushed to the hospital to comfort her friend. It was ironic that Jacob was being treated in this particular cancer ward; three years earlier, Lori had planned to volunteer there but found she couldn’t. On the first day of volunteer orientation, she saw the children on the ward and it just overwhelmed her.

Now, all she had in mind was how to help her friend. Angel told Lori she wanted to stay with her son in the hospital, but worried that if she didn’t work, the family would lose needed income, not to mention their health insurance, which was an absolute necessity. Lori quickly organized a party for their friends that raised enough money so Angel could leave work to be with Jacob.

The party began Lori’s dream of starting a nonprofit.

She started to think of the other children and parents and caregivers on that cancer ward. What if there was a way to help them? What would that look like?

To find out, Lori consulted with a nonprofit “professional” only to be condescendingly told that running a nonprofit would be too much for her. Calling her “honey,” the pro told her that Lori could never start a nonprofit because the paperwork alone would overwhelm her.

What?

Fortunately, Lori’s vision and passion were stronger than the consultant’s words and soon afterwards, Jacob’s Heart Children’s Cancer Support Services was launched in 1998.

For more than 20 years, the group has improved the quality of life for children with cancer and supported their families in the myriad of challenges they face – emotional, practical and financial.

Following the Maslow’s Hierarchy of Needs, the nonprofit services include basic needs, such as financial assistance paying bills, volunteers bringing by groceries and meals, and transportation to and from treatment. But it also offers emotional support through counseling and therapies and a strong sense of community, where people can celebrate milestones or comfort each other in grief.

Jacob’s Heart deeply understands that the child undergoing treatment needs to be treated with respect and dignity, and that they are unique individuals. This means each family’s situation is unique as well, so the group tailors its services to each family to best meet their needs and allow them to focus on their ill child.

The nonprofit also focuses on offering extensive information about pediatric cancer and fighting misperceptions, such as the idea that cancer is contagious. It advocates the #morethan4, a reference to the fact that only 4 percent of the National Institute of Cancer’s research budget is dedicated to pediatric cancer.

Jacob’s Heart also spurred Lori to start two other nonprofits over the past 20 years.

“I have fallen in love with the nonprofit sector,” said Lori, “because in spite of our imperfections – and there are many – nonprofits do far more with far less than any corporate social venture or government program can do. Nonprofits bring out the best in us; they give us a place where we can express our generosity and our compassion. I really believe that in this country, it balances our ethics with our economics.”

From being someone who was apprehensive about whether she could volunteer on a children’s cancer ward - and then was encouraged not to start a nonprofit because the paperwork might “overwhelm” her - Lori has founded and nurtured numerous nonprofits that have helped hundreds of families. Along the way, she’s also been honored with Oprah Winfrey’s “Use Your Life Award,” California Association of Nonprofits “Achievement in Innovation” for development of creative, successful program strategies, and the Robert Wood Johnson Foundation “Award of Excellence” for the Western United States.

Learn more about Lori and Jacob’s Heart here to see how they are giving comfort, hope, healing and practical help to make the lives of children with cancer better and support the families who love them.

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