Supporting Youth Who Lost Loved Ones to ALS

Jodi O’Donnell-Ames, Founder of Hope Loves Company, explains the organization’s goal to provide educational and emotional support to children and teens who have lost their loved ones to ALS.

12/8/18 #3129

5/3/19 #2214

Excerpt:

"We are pleased to welcome, once again, Jodi O'Donnell-Ames, the Founder and President of an organization called Hope Loves Company. Good to see you, my friend. Good to see you too. We met each other at a great event. Describe the Russ Berrie Awards for Making a Difference. It's incredible. Angelica... what Angelica and... Angelica Berrie? Yeah? Right. ...the late Russ Berrie have created is such a tribute and such an honor to be a part of that. The day, as you well know, is about celebrating people doing good things. That's right. And inspiring, really. Unsung heroes. You have a hard job because you have to continuously say what you do is amazing. Well no, we should tell folks that... I've been proud to host... humble to host the event since its inception, and I've met so many incredible people, like yourself. You were one of the $5,000 prize winners? Correct. Describe Hope Loves Company. The story behind it. Hope Loves Company is a journey. Basically in 2000... no, I'm sorry. In 1995, when I was 29 years old, my husband was diagnosed with ALS, or Lou Gehrig's disease. And to be honest, I didn't know much about it. We had a toddler at home and basically we were told that, and the way I look at it is, our lives were cut short because my dreams were with my husband and my child, and thinking about having another child, and... in our lives ahead of us, and at that moment, it was at the University of Pennsylvania. Now what? Now what do we do? So Hope Loves Company started when he passed in 2001, and I started to think about children who have loved ones living with ALS, and the journey they go one, and how many of them are caregivers and how their lives change. You saw what happened to your daughter? I saw what happened to my daughter. My husband, at the time of his passing, was... he was ventilated, he had a feeding tube, he was speechless, he was paralyzed. And our daughter was two and a half to eight years old during that time, and I recognized the things that she said to me such as, "Well all of the other dads." But I also recognized, that she had an understanding. A level of understanding about life, and about compassion, that maybe another eight or nine year old would not have had. but a profound impact? A profound impact. You remarried? I did remarry. So, I started working as the Director of Communications in Philadelphia. You have a great memory. And my husband delivered a book called, "What Did You Learn Today?" He was not my husband at the time, but I was working with children..."