A Pennington-based nonprofit is giving emotional and educational support to children and young adults who have had or have a loved one living with the devastating neuromuscular disease known as Lou Gehrig’s disease.
Started in 2012, Hope Love Company provides a free weekend retreat where kids can go with their families to have fun, share experiences and meet others kids who find themselves in the same situation.
A person with ALS, which stands for Amyotrophic Lateral Sclerosis, loses muscle function, so as the disease progresses they eventually lose the ability to walk, speak, eat and breathe — a fact that Hope Love Company’s founder O’Donnell-Ames knows too well. She lost her husband to ALS 18 years ago and started working with the ALS Hope Foundation, where she met her current partner, who also lost his significant other to the disease.
“Through that process of raising three children who all lost a parent to ALS, I recognized that children needed to be supported,” said O’Donnell-Ames.
Today, Hope Loves Company supports individuals like West Orange residents Amaya Lynn and her younger sister Aubrey, whose father received an ALS diagnosis last summer.
“It’s been hard. It’s been a slow progression. His speech is slowly starting to go a little more,” said Amaya Lynn, a sophomore at New Jersey City University who commutes two hours by bus each way so she can help take care of her father at home.
Lynn continued, “My first camp there I met two girls who were in my age group who I clicked with instantly and we still talk all the time, and it really helps.”
The nonprofit runs its camps in six states.