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From Grief to Hope: Camp HLC Featured on NBC News

Camp HLC is a free, three-day overnight retreat for children and teens who love someone with ALS or who have lost a loved one. Recently, NBCU Academy captured the heart of this experience in a powerful segment highlighting the strength, vulnerability, and resilience of the young people we serve.



ALS (also known as Lou Gehrig’s disease) is a progressive illness that weakens muscles and impacts physical function. Most people live two to five years after symptoms develop. Every 90 minutes, someone is diagnosed with ALS or someone passes away from it.


For children, this means watching a parent or loved one gradually lose mobility. A cane becomes a walker. A walker becomes a wheelchair. Eventually, everyday tasks require assistance.


Many of the children who attend Camp HLC help prepare meals, assist with mobility, manage medications, or simply provide emotional support at home. Across the United States, more than 5.4 million youth help care for an ill loved one.


Yet caregiving is only part of their story.


They are also children navigating fear, anticipatory grief, uncertainty, and profound change.


A Space Where They Are Not Alone

The NBC News segment features siblings whose mother was diagnosed with ALS two years ago. At camp, they met other kids who understood what was ahead... children who had already walked similar paths.


As Eric shared, camp helped him understand what to expect as the disease progresses. Those honest conversations, though difficult, replace confusion with preparation and isolation with connection.


Another parent featured in the segment shared something we hear often:

“I think having the support around you from other children that understand, that’s a comfort in itself.”

At Camp HLC, children gather in healing circles facilitated by grief counselors. They engage in art and music therapy. They participate in team-building activities that build confidence and trust. They talk openly at their own pace about what ALS means in their lives.


And sometimes, they simply laugh.


Because they are still kids.


Why Hope Loves Company Exists

Hope Loves Company was founded in 2012 by Jodi O’Donnell-Ames after she lost her husband, Kevin, to ALS. She experienced firsthand the immobilizing grief that follows such a loss — and the deep need children have for community during that journey.


In the NBC segment, Jodi shares:

“The more tools we can give children to voice how they're feeling and to cope with what they're feeling, at their pace, the better the chances are that they become capable, loving, and caring adults.”

What began as personal heartbreak has grown into a nationally recognized nonprofit offering:

All of our programs are provided at no cost to families.


We are deeply grateful to NBCU Academy and storyteller Maya Brown for amplifying the voices of children who love someone with ALS or who have lost a loved one. The more families who hear about Hope Loves Company, the more children we can reach with connection, tools, and hope.


If you know a family navigating ALS, please share this story with them. And if you would like to support our programs, your generosity helps ensure every child can attend Camp HLC free of charge. Together, we are turning grief into hope: one child, one family, one campfire at a time.


 
 
 
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