Recently, the Hope Loves Company office in New Jersey buzzed with purpose. Volunteers gathered around founder Jodi O’Donnell-Ames, assembling brightly colored “Hugs of Hope” care packages — small bundles of comfort destined for children across the country who are watching someone they love battle ALS.
Each box contains a t-shirt, stickers, an age-appropriate ALS resource book, and a handmade card with a keychain — crafted by students in Nanette Younan’s art class in the Bridgewater-Raritan School District. The book, The Stars That Shine, written by O’Donnell-Ames and illustrated by her daughter, Alina, is designed to help children understand and adapt to the unfamiliar medical world ALS often brings into their homes.
“Many of the children we serve are young,” said O’Donnell-Ames. “When they learn that a parent has ALS, most likely, they have never heard of the disease or met anyone who lives with it. Meeting another child who has a parent or grandparent facing ALS helps to alleviate feelings of isolation and encourages a community of support.”
Founded in 2007, Hope Loves Company is the only national nonprofit focused specifically on children and teens affected by ALS, or Lou Gehrig’s disease — a progressive neurodegenerative condition that leads to loss of mobility, speech, and eventually, life. The organization’s mission is rooted in O’Donnell-Ames’ own family history: Her first husband, Kevin Gerald O’Donnell, died from ALS in 2001, leaving their then-toddler Alina grappling with grief and confusion. Years later, she married Warren Benton Ames and became stepmother to Nora and Adam, whose biological mother, Tina, also passed from ALS.
That personal connection fuels the heart of Hope Loves Company, which now serves hundreds of families nationwide. Each year, the organization sends over 500 care packages and hosts multiple camps including throughout the year including Camp HLC, a free weekend retreat that blends recreation with emotional support. Campers find companionship in shared experiences and a rare chance to feel seen.
Volunteer Stacey Burd, who helped assemble the latest batch of care packages, said she’s been inspired by O’Donnell-Ames’ commitment to the cause. “I have been friends with Jodi for 10 years and through this I was introduced to Hope Loves Company. Jodi is an amazing person who is dedicated to supporting the ALS community. With her work creating and running her non-profit, it has inspired me to give back to the community as well as support her in her journey.”
Beyond camp and care packages, Hope Loves Company also offers educational tools and peer networks, both virtually and in person, to help families navigate the complexities of ALS together. In a field where services for children are often an afterthought, the organization stands out — not just for what it provides, but for the sense of belonging it builds.
Through every hug sent in a box, every story shared at camp, and every moment of connection, Hope Loves Company continues to grow its impact — one family at a time.
