The most advanced cancer therapies and best, affordable cancer care will provide little benefit to patients if they don't have the means to physically access those treatments. Reliable transportation is therefore an integral part of the cancer experience, and one that is not always formally addressed.
But one family's personal tragedy and subsequent desire to turn suffering into healing through service to others has evolved into a life-affirming lifeline for children with cancer and their families in Southern California.
I spoke with Richard Nares shortly after he was selected as one of the Top 10 CNN heroes of 2013—“everyday people changing the world”—for his work with the now 10-year-old Emilio Nares Foundation (enfhope.org) that he and his wife Diane established to honor the memory of their son Emilio, who died in 2000 two years after being diagnosed with acute lymphoblastic leukemia when he was three-years old.
The Foundation organizes and provides free daily transportation for poor children with cancer to Rady Children's Hospital in San Diego and Children's Hospital of Orange County (CHOC) in Orange, Calif., and also offers information and family support through its Family Resource Center at Rady, which includes patient navigation services for multicultural families experiencing linguistic or cultural barriers to understanding their children's diagnosis or treatment.
Coincidently the phone conversation took place the day before the 13th anniversary of Emilio's death following two remissions and an unsuccessful attempt to find a suitable bone marrow transplant donor.
Nares's work had originally been featured on CNN in May (cnn.com/2013/05/02/health/cnnheroes-nares-cancer-rides/index.html) when he was named a CNN hero. Now, as a finalist, he and nine other heroes will each receive $50,000 for their nonprofit organizations. The winner's organization will be awarded an additional $250,000 at “CNN Heroes: An All-Star Tribute,” airing December 1 from the American Museum of Natural History in New York. During the past seven years CNN has profiled more than 200 heroes, with each year's finalists and winner selected by CNN viewers.
This was not the first national recognition for the regional program. Nares was specifically acknowledged by President Obama in St. Louis at the 2009 Major League Baseball All-Star Game as one of 30 “all-stars among us” for his Ride with Emilio Program, and has received numerous other awards and recognitions including the 2011 Community Health Leaders Award from the Robert Wood Johnson Foundation.
The foundation work was an unexpected career change for the former picture framer whose life was turned around dramatically through Emilio's diagnosis, treatment, and subsequent death.
“During the time Diane and I spent in the hospital with Emilio, we would hear the social workers talk about other kids who didn't show up for their treatment, and learned that lack of transportation was often the reason,” he said, adding that he and his wife were fortunate to have flexible schedules, understanding employers, and friends and family available to help out.
He explained that after losing Emilio he struggled with his priorities and what to do after working 25 years as a picture framer. Acknowledging that he could just lock himself down or move forward, he wanted to turn his pain into something helpful and healing, and for a while used his skills to make children's furniture.
“It started as baby steps with helping out, and when I learned that Rady needed help meeting the transportation needs of its poorer patients, I started volunteering and driving kids and their families in my old Buick. We were blessed to have had Emilio, and he was an inspiration to do something positive. I know he is looking down and smiling.”
Soon inundated with requests for rides, Nares discussed the situation with social workers and nurses. The solution would be a formal transportation system with regularly scheduled rides for children and a parent or guardian. Still, he was told that prior attempts at such a system had not been successful.
Nares said it was important to have a paid staff with accountability since volunteers could not always be relied upon to be there to deliver children for their often-critical hospital appointments. He raised some funds, hired a driver, and set up a schedule for picking up and dropping off patients. He also started serving as a local spokesperson for bone marrow transplantation registries, encouraging minorities to register.
It was important that the vans be clean for immunosuppressed riders, and drivers had to be knowledgeable about medical privacy and other matters, he said. But what really motivated him to establish a fulltime, dedicated service was learning that two pediatric cancer patients who had traveled by public transportation for their chemotherapy had been beaten up after getting off the bus on their way home.
Nares said that Michael Lopez Sr., a cofounder of the Bravo Foundation in San Diego, had told him that if he wanted to help more people and was willing to apply for 501(c)(3) status, then the foundation would initially donate $5,000.
That seed money helped create the Emilio Nares Foundation, which started serving patients at Rady (who are also transported to UCSF Moores Cancer Center for radiation therapy) and later added kids from CHOC. Today there are five vans, with each covering about 30,000 miles for a total of more than 2,500 rides a year. Nares said he also wrote grants for about $130,000 the first year.
In addition to Executive Director Nares, ENF has a program coordinator, administrator, development officer, patient services/operations officer, Orange County transportation director, office manager/volunteer coordinator, and two fulltime drivers. His wife, who continues working in wine sales, serves as President of the foundation's board.
Nares said that as far as he knows, Ride with Emilio is the only freestanding, dedicated, free transportation service for kids with cancer. “When we received a three-year $150,000 grant from Livestrong in 2009, we were told we were the only organization that had submitted a grant for transportation,” he said, adding that he has since been contacted by interested parties in various parts of the country looking to provide similar services.
Keeping the organization going has involved grants, contributions, and creative collaborations and fundraising. For example, in partnership with the San Diego Padres baseball team, Nares will be distributing “Loving Tabs” T-shirts to local pediatric cancer patients. The patent-pending shirt, created and designed by a staff member, has a series of snaps situated around the shoulder to allow easier access of medication through ports.
And in the spring, the 60-year-old Nares ran 700 miles over a month's time from San Francisco to San Diego during his “Richard Runs California” fundraiser to help children fighting cancer, and he said he hopes to launch an endowment campaign in 2014.