In June 2019, Senior Development Director Carol Hamilton spoke with Hope Loves Company Founder Jodi O’Donnell-Ames and Program Director Cara Haggerty about their work supporting families affected by ALS for the Endpoints Podcast.
You can listen to this episode here.
Since the recording of this podcast, the Digital Marketing Manager at ALS TDI volunteered at the Massachusetts and Florida HLC camps. "Camp was such a wonderful experience, and I can't wait to volunteer again next year!"-Emily Dhondt
More About Hope Loves Company
Hope Loves Company (HLC) is the only U.S. nonprofit focused solely on educating and supporting children and young adults who had or have a loved one battling ALS. Almost 85 percent of the 300,000 Americans diagnosed with ALS each year have children or grandchildren. Though the families of people with ALS often feel isolated, their experience is shared by many.
HLC’s mission was born of Jodi’s own family’s experience with ALS. When Jodi’s late husband Kevin O’Donnell was diagnosed with ALS, their daughter was only three years old. As Kevin and Jody worked to understand the realities of ALS in the face of progressing symptoms, they were also tasked with explaining the disease to their toddler.
As their daughter grew, ALS played a central role in her childhood and, naturally, her curiosity grew as well. She had questions about her father’s illness, and Jodi and Kevin had questions on how to broach these topics with her.
How do you explain ALS to your three-year-old versus your eleven-year-old? What topics are your kids mature enough to handle? Should you let your kids’ school know what the family is facing? And how do you provide a safe space for your kids to express their emotions?
Now 18 years after Kevin’s death, Jodi and HLC are working to help families affected by ALS answer these questions in the best possible ways. They offer educational materials to guide age-specific discussions about ALS, organize family-friendly events, lead virtual support sessions, and will host the first HLC Kids Count Conference in October 2019. They also run Camp HLC, a free three-day weekend retreat held in six cities across the country that gives children and young adults a chance to connect and communicate with one another about ALS.
Connect with Jodi and Cara, check out HLC’s educational resources, and find out more at www.hopelovescompany.org.