When Jodi O’Donnell-Ames lost her husband to ALS in 2001, she was forced to reconcile her grief with that of her young daughter who had lost her father. Sometime after losing her husband, she met Warren Benton Ames, a man who was left with his two young children after his own spouse passed away from ALS. Jodi and Warren married, and in combining their lives, found themselves raising three children affected by a disease they didn’t understand.
In trying to find resources for children impacted by ALS, Jodi quickly learned that there were no good options. After their children had grown, Jodi made it her goal to create an organization dedicated to providing emotional and educational support to children and young adults who have or have had a loved one battling ALS (also known as Lou Gehrig’s disease). That organization, a nonprofit named Hope Loves Company, is the only one of its kind and offers services such as Family Fun Days, overnight camps, care packages, scholarships, educational materials, and more.
The joys of being a child should be unlimited, with time spent playing outdoors, using their imagination, creating arts and crafts, and living a carefree life. For children with loved ones battling ALS, activities are more limited by caretaking responsibilities and the emotional toll of witnessing a close family member change with each passing day.
That’s why Jodi created Camp Hope Loves Company (HLC): a classic camp experience for children and young adults with family members battling ALS. At Camp HLC, kids sleep in log cabins, eat in the mess hall, have campfires, and spend time outdoors doing activities such as swimming, hiking, archery, and fishing. The bonus of Camp HLC: kids are exposed to other children their age who understand what they are going through. While an adventurous, carefree weekend is the main goal of Camp HLC, group counseling sessions provide an opportunity for campers to express themselves and their experience with ALS in their families.
The benefits of Camp HLC become clear when talking to any of the Young Ambassador Program participants. Teenagers and young adults ages 14-22 who have attended at least one Camp HLC weekend can apply to become HLC Young Ambassadors. This group of individuals attend meetings, spread awareness about ALS and Hope Loves Company’s mission, and develop professional skills in business, writing, public speaking, and marketing. For many Young Ambassadors, participating was a given after experiencing the growth and understanding they developed by attending Camp HLC in the past.
Jodi’s efforts in ALS outreach stretch beyond the Hope Loves Company organization with her publications about the disease. Jodi helped edit Someone I Love Has ALS: A Caregiver Guide,which was created by a variety of caregivers and professionals who have experience dealing with different aspects of ALS. As an author, Jodi penned The Stars That Shine, a fictional story about a young girl coping with change after her father is diagnosed with ALS, as a tribute to all children who live with a disabled or terminally ill patient.
“This is truly just the beginning of the mission we envision [at Hope Loves Company],” says Jodi.
To learn more about the history and mission behind Hope Loves Company, visit hopelovescompany.org, watch their official documentary on YouTube, or follow Hope Loves Company on Facebook, Instagram, and Twitter.
