Meet an ALS Nonprofit: Hope Loves Company

ALS changes a family overnight, but the hardest question is often the one nobody sees coming - how do you help the kids? This conversation with Jodi O'Donnell Ames and Maggie DeMarco of Hope Loves Company shows what real support looks like when children are living with ALS, grieving a parent, and trying to stay kids at the same time. Jodi, founder of Hope Loves Company, shares the origin story behind the nonprofit she built in memory of her husband, Kevin, and the programs that grew from that loss - Camp HLC, Hugs of Hope care packages, Beyond the Bunk support groups, parent meetups, and age-appropriate books that help families start the conversation. Maggie, Hope Loves Company's Head of Strategic Program Growth, adds the perspective of someone who cared for her father through ALS and now helps expand support for kids, teens, and young adults nationwide. You'll hear how they help families answer the question, "What do we tell our child?" without overwhelming them, why kids often understand more than adults expect, and how tools like music, art therapy, yoga, Uno, and peer support give children safe ways to express anger, fear, grief, and hope. They also break down the hidden realities young caregivers face - isolation, financial strain, lost friendships, role reversal, and the pressure to hold a family together before they're even grown. We break down why meeting children where they are matters, how Hope Loves Company creates truly inclusive camp experiences for kids with different needs, and why the nonprofit's mission is as much about connection as it is about coping. The result is a powerful reminder that children can be resilient, but they should not have to navigate ALS alone. Perfect for anyone supporting a family affected by ALS, working in caregiving, grief, child life, or advocacy - and for every parent asking how to protect their children through something unthinkable. Part of our Meet an ALS Nonprofit series. http://ALS.Community is a free, one-stop platform for everyone impacted by ALS. We bring together patients, caregivers, family, clinicians, and researchers to share, learn, and connect. Join our community today: http://www.als.community Follow Us: Instagram: https://www.instagram.com/als.community/ Facebook: https://www.facebook.com/als.community #ALS