On a night in December 2016, Jodi O’Donnell-Ames — Hopewell resident and founder and president of non-profit Hope Loves Company (HLC) — decided to drive to Burlington for a Startup Story Slam.
The event was held for small business owners to share their story in five minutes, with no props, PowerPoints, videos or photos. After speaking about how caring for her late husband, Kevin O’Donnell, who passed from amyotrophic lateral sclerosis (ALS) in 2001, spurred her to develop her non-profit in Pennington, she won the competition.
“This small in stature — but not in accomplishment — woman comes up, and it’s Jodi,” Steve Besserman, filmmaker and chief storyteller at AriJoe Productions recalled. “And she told her story and blew everyone, including me, away.”
It was there that the two met and began discussing a project that ultimately became “Hope Loves Company,” a documentary that premiered at the New Hope Film Festival on July 21 that features the work of O’Donnell-Ames’ non profit.
The documentary showcases how ALS affects children and forces them to grow up much quicker than their peers; it also depicts how these children can find light in the dark through the organization’s mission and free, weekend-long camps.
“I’ve always been interested in documentaries when it comes to the possible venue to really make an impact, and something that can be seen by a really broad audience,” O’Donnell-Ames said. “And I think because we’re the only organization doing what we’re doing, it would make sense that we would cover something about caregiving children because I’ve never watched one about them. I thought it would be another venue for opening eyes and creating discussion.”
When O’Donnell-Ames and Besserman met at the HLC offices a week after the Startup Story Slam, the organization had a trip to Iceland scheduled for July 2017. The two quickly grew interested in documenting the drip, as well as going beyond the travel to share the non-profit’s mission.
Since 2012, the organization has since provided 16 camps across the nation to children who have a parent who has died from, or is currently living with, the progressive neurodegenerative disease. The most recent completed in May in New Jersey.
The camps aim to provide children with activities such as rock climbing, hiking and canoeing. They are also able to bond with each other and make connections with other children who understand how ALS can affect a family.
The documentary began filming in February 2017 and ended in July, when the group returned from Iceland. There, they met and spoke with members of the Icelandic Motor Neurone Disease (MND) and Amyotrophic Lateral Sclerosis (ALS) Association, as well as those suffering from the neurodegenerative disease.
The film also profiled families whose children participate in Camp HLC, including Frank and Marilyn Mongiello and their daughters Samantha and Ilyssa.
Frank is living with ALS and uses a Tobii eye-tracking computer to communicate.
Besserman said filming the families hit close to home, as his aunt passed from ALS a few years ago.
“I told people that the stories are both heart wrenching and heartwarming,” he said. “It’s heart wrenching because of the effects of the disease on the patient and the family, as well. People need a lot of physical strength and emotional strength to get through it. It’s heartwarming in terms of what the children do for their loved one, their parent, in many cases.”
Mackenzie Anderson lost her mother to ALS, and Michael Hunter-Toland lost his father. The two are members of the Young Ambassador program and attended the trip to Iceland. Anderson also assisted in creating a scholarship in her mother’s honor.
“This disease makes kids not feel like kids,” Anderson said to those at the Icelandic MND/ALS Association meeting. “Camp HLC allows kids to be kids again.”
O’Donnell-Ames said that seeing the film for the first time on the big screen was a “bittersweet” moment.
“The topic is ALS, which is a terminal illness, so there’s no way around the sadness that that creates,” she said. “However, thinking of all of the people involved — regardless of that sad topic — has helped make this all happen, and it’s nothing short of a miracle. Why did I choose to go to Burlington last minute? There’s just a reason I think these things take place.”
From filming the documentary, Besserman was able to see the “incredible” impact O’Donnell-Ames and HLC has on the children.
“She’s the only non-profit dedicated to providing that support for these children,” he said. “When I went to the camps and to Iceland, to see the bond between these kids, it’s so deep. It’s beyond friendship. They become each other’s support.”
Besserman said that “Hope Loves Company” has been submitted to various film festivals, and plans to broadcast the film are currently being discussed.
“To me, it’s all about making dreams come true,” O’Donnell-Ames said. “Never did I think there would be a documentary and someone from another country learning about what we do and changing the dialogue.”