When Bruce Lucia’s older brother Ray was diagnosed with amyotrophic lateral sclerosis (ALS) in July 1999, he promised to do everything he could to help fight the disease.
“He was my idol. I loved him like no other person who was around. He was my best friend. We did everything together,” said Bruce Lucia, who was president of Kroger’s Atlanta division for 18 years until retiring in October. “I remember saying to him, ‘I’m on a number of boards of hospitals and we’ll get you the best care. We’re going to beat this.’ I am an eternal optimist. He said, ‘Bruce, you can’t beat this.’ The more we learned about it, the more we discovered you can’t beat this. There is no cure. ...
“He told me, ‘Try to make a difference so others won’t suffer as I’ve suffered.’”
Ray Lucia died in September 2000. In honor of his brother, Bruce Lucia founded the Kroger ALS Golf Challenge, which in 20 years has raised more than $3 million for the ALS Association’s Sandy Springs-based Georgia chapter.
Bruce Lucia and Nancy Frates were honored by the chapter at its fourth annual Heroes Among Us Awards Luncheon Aug. 2 at the InterContinental Hotel in Buckhead. Bruce Lucia, who was a longtime Stone Mountain resident before moving to St. Petersburg, Florida, upon retirement, said he’s more hopeful today that a cure for ALS will be found.
Of the award, he said, “All I do (is) I try to help and I try to make things better for people and particularly ALS patients. I was involved with a lot of other community activities, fundraisers and so forth. This one is personal to me, and to get (the award) with my brother’s name on it means everything. He was, like I said, my best friend. I felt his presence when I was up there speaking. He was an amazing guy.”
Bill Nordmark, the chapter’s board chair, gave some grim statistics at the luncheon, saying there are 600 individuals in Georgia living with ALS. On the national level, the life expectancy after diagnosis is an average of two and a half to five years.
“Every 90 minutes someone dies, and every 90 minutes someone is diagnosed with the disease,” he said. But on the positive side, Nordmark added, the chapter decided to hand out the awards to spotlight the work volunteers do to help fight for a cure for ALS.
Frates, who lives in the Boston suburb of Beverly, Massachusetts, was honored for her role as an ambassador and public speaker on behalf of her son Pete, who helped start the Ice Bucket Challenge in 2014, and their family.
The challenge, a spinoff of other similar fundraisers involving water, consists of an individual dumping water on himself or herself or having someone else do it for him or her or of a group participating. She said her son’s diagnosis in March 2012, when he was only 27, was quite a shock, especially when she heard there was no cure.
“Six hours after (Pete Frates’ diagnosis), I stand before you today because of the 27-year-old ALS patient who looked at his family and said, ‘This is unacceptable. We’re going to get go the work. We’re going to change the trajectory of this disease. We’re going to show people we can defeat this disease,” Nancy Frates said.
Pete Frates’ efforts paid off in spades. Starting in early July 2014, during an eight-week period that summer, $115 million was collected through the challenge. Overall, it has brought in $222 million for the ALS Association and its worldwide partners. Pete Frates used Facebook and other social media platforms to raise awareness of the disease through the challenge. Seventeen million videos of individuals or groups participating in the challenge were uniquely viewed over 10 billion times on Facebook and other platforms.
“We almost broke the Facebook server,” Nancy Frates said. The challenge also had the No. 6 hashtag for good on Twitter in 2014, and, the phrase “What is ALS?” was Google’s most-searched term that year.
But more importantly, Nancy Frates said, was the fundraising aspect, with $89 million going to ALS research, helping spurn the discovery of a new drug, Radicava, which fast-tracked by the FDA for approval in 2017.
Also, before the challenge, researchers had discovered only one gene associated with ALS. But in the last five years, including work at Emory University in DeKalb County, they have found five more genes.
On the day of the luncheon, Pete Frates was hospitalized in Boston with pneumonia but expected to be released by the following Monday. Nancy Frates said she was honored to receive the award, but it was more about Pete and the rest of the family.
“When I started this journey, it was to save my son. That’s all I could go to bed (thinking about). That was my mantra every day,” she said. “But over the past seven and a half years, my scope has absolutely grown, and I’ve had the opportunity to meet ALS patients all over the world. And as everyone says, they are the most amazing people you will meet.
“This disease is a terrorist. It terrorizes a family, a community, a village, and we need to stop it. And guess what? We’re going to now. It’s just a matter of keeping the dollars coming in. But the researchers are telling me and the top doctors in the field are telling me it is going to happen.”
The chapter will host its annual Walk to Defeat ALS Sept. 14 at Georgia State Stadium (the former Turner Field) in southeast Atlanta. Check-in is at 8:30 a.m. and the walk begins at 10 a.m.
For more information on the chapter or the walk, visit https://bit.ly/2T1dGvU.