The Rivera family with Dr. Julian Solway (left)

Donor Stories

Raising Money for Asthma Research

For those who knew him best, Rafael Rivera III was a gentle, free-spirited soul who never met a stranger. But his sudden death from asthma connected his family to the 5,000 people who die from the disease each year, and to a much bigger cause. "It's robbed a lot of lives, but it's opened way more doors and pushed us to do things that we wouldn't have never done," says Rafael's younger brother Marques Rivera.

Rafael was just 26 years old when he died of complications due to asthma, a disorder that causes the airways of the lungs to swell and narrow, but the legacy he leaves behind far exceeds his young age.

“If there’s one thing I could say about my brother it’s that he was the embodiment of love,” says Marques. “He was a gifted artist, and he wanted to use that gift to help individuals with developmental disabilities and was progressing toward a degree in art therapy before he passed away.”

Golfing for Research
Like the rest of his family, Rafael was an avid golfer, so to help keep his memory alive, the family established the Rafael Rivera III Memorial Golf Outing for Asthma Research. Now in its 11th year, the golf outing has netted more than $150,000 to support asthma research at the University of Chicago Medicine.

“We wanted to contribute to something that would resonate throughout the community of individuals who are dealing with asthma,” Marques says. “We not only want to make people’s lives a little easier, but potentially bring about a finite solution to asthma.”

At the 10th annual golf outing last year, the Riveras spoke about how they dealt with their loss and how Julian Solway, MD, the Walter L. Palmer Distinguished Service Professor of Medicine and Pediatrics, compassionately embraced their desire to help others.

“When I called the University of Chicago, they connected me to Dr. Solway. He took the time to listen to me, and we’ve been together ever since,” says Rafael’s mom Joanne.

This year, a new pilot program has been established that will provide up to three, one-year $25,000 research grants for investigators to focus on a variety of research areas including:
· Those that could lead to improved understanding of asthma treatments
· Early-stage studies that are considered high-risk, high-reward
· Those that will increase the likelihood of extramural funding for continued research

“It has been an extraordinary experience partnering with the Riveras,” Solway says. “They are an inspirational family who have been inspired by this tragedy to raise a very substantial amount of money for research. It is unbelievable what these wonderful folks have done.”

And the Riveras are confident that Solway and his team will make great strides toward eradicating asthma. “We all feel that the work Dr. Solway and his staff are doing is transparent and he always shares it with us,” Marques says. “We know we’re in the right place. If a cure were ever to happen, it will happen here and it’s going to happen with these people.”

fAMILY GETS BUSY LIVING
In the midst of their grief, the Riveras had a choice to either remain broken or to get busy living. After much consideration, Rafael’s father, Rafael Junior, retired from his job and quickly got involved in local politics and was soon elected alderman of his ward. He was also named president of the Lions Club chapter, joined the Knights of Columbus, and the YMCA.

Additionally, Rafael Junior has been busy establishing more ways to raise funds for asthma research and is currently in talks with a Waukegan car company to have proceeds from each car sold going to support Solway’s pilot grant program.“We’re just a regular family,” says Rafael Junior. “Small families can give back too. It doesn’t necessarily have to be just the big corporations.”

Rafael III’s grandmother, Carmen Rosario, and grandfather, Santiago J. Santiago, have also volunteered and played a role with the family’s fundraising efforts. “He was my walking buddy and he used to say, ‘Grandma, when I get big, I’m going to have my own office and I’m going to have a big picture of you in there,’” says Rosario. “We used to talk a lot and it was very enjoyable. We miss him.”

For Joanne, calling Marques while he was away in college and sharing with other family members that her eldest son had passed was the hardest thing she’s ever had to do. “I don’t want any mother to go through what we did,” she says, fighting back tears. “He was a very good boy, but it was his time to leave us.”

As they each hold onto fond and endearing memories of Rafael III, Marques—who named his son Rafael IV—is confident that his brother did not die in vain. “If I could hope and shoot for the stars, it would be that Rafael Rivera III was partly responsible for wiping asthma off the face of this earth,” he says. “He really touched a lot of people’s lives.”