In this episode of The Endpoints Podcast, Senior Development
Director Carol Hamilton speaks with Hope
Loves Company Founder Jodi O’Donnell-Ames and Program Director Cara Haggerty
about their work supporting families affected by ALS.
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
Jodi and Cara, check out HLC’s educational resources,
and find out more at www.hopelovescompany.org.