It was just before Christmas in 2015, and Ellie Hanley felt terrible. One morning, the Alexandria sixth grader woke up and her eyes were nearly swollen shut.
Her parents rushed her to the doctor where Hanley was quickly diagnosed with pneumonia. Then, a routine urine test revealed another issue: abnormal kidney function. Doctors did a kidney biopsy, and the family had to wait until after the holidays for the results.
The news was not good. Hanley was told she had focal segmental glomerulosclerosis – a rare, incurable disease that causes scarring on the kidneys, making it difficult to filter waste. In some cases, the chronic condition leads to kidney failure, necessitating a transplant or lifelong dialysis to live.
Hanley, now a first-year student at the University of Virginia, takes about 15 pills a day to manage her condition and says she feels “really fortunate” to continue her passion: long-distance running.
Also an accomplished lacrosse and field hockey player, she was determined not to let her diagnosis dictate her life. During high school, when her sports teams took a break during the pandemic, Hanley suddenly had more time for running and a chance to achieve a childhood dream of running a marathon.
Then she had an even bigger idea.
“When I started thinking about signing up for the marathon, I just kind of brainstormed the idea of how I could do a fundraiser in addition to it,” she said. Hanley floated the idea to the American Kidney Fund, a nonprofit that promotes kidney health, awareness, education and disease prevention.
“The fund helped me in setting up my website, in which I was able to post my whole story of having kidney disease and have my fundraising goal where people could donate directly,” she said. “On the first day that my training started, 16 weeks out from the marathon, I started posting to my social media with my fundraising website link. I would post there frequently. I also sent out emails to basically every single person I knew.”
Hanley signed up for the San Francisco Marathon and set an ambitious goal: raise $26,200 dollars, or $1,000 for every mile run in a marathon. She achieved that when she and her mother, Amy, ran the race together in September of 2021.
Congratulations to our 2022 AKF Hero of Hope, Ellie Hanley! During the pandemic, Ellie turned a 26.2 mile marathon into more than $27,000 to support people with kidney Disease. #TheHopeAffair2022. pic.twitter.com/XRLqmwEqYs— American Kidney Fund (@KidneyFund) October 20, 2022
Hanley said she felt a keen sense of purpose with every stride she took during the race.
She wore an American Kidney Fund-branded rubber bracelet. “Whenever I got really tired or could just feel how much longer I had to go, that bracelet, and just knowing that I was running for another cause and a whole group of people, gave me an additional sense of purpose and wanting to finish,” she said.
‘Hero for Hope’
Hanley completed the marathon in 4 hours, 36 minutes, and with the help of more than 100 donors, raised $27,604. On her fundraising page, she wrote, “Your contribution helps to ensure that every patient has access to lifesaving care. Your gift makes a difference today. I am particularly proud of the fact that [American Kidney Fund] spends 97 cents of every donated dollar on patients and programs.”
Last month, the American Kidney Fund honored Hanley’s activism at a lavish ceremony at the National Portrait Gallery in Washington, D.C., naming her a “Hero for Hope.”
“It was a beautiful event and some of my college friends came back with me for it. It was really fun having them there, as well as getting to see my family,” she said.
In a video screened at the awards ceremony, Hanley’s parents talked about their daughter’s perseverance, and said it’s been a challenging road. “The journey's been up and down,” her father John said. “We’re now at a place where she’s still taking a lot of medication and her kidneys, they believe, are now at about 70%, so we’re just hoping that it can stabilize her for as long as possible.” The average 65-year-old’s kidney function is about 85%.
“It was a great marathon,” Hanley’s mother, Amy, said. “Ellie and I ran probably the first 12 miles together.
“We didn’t know anyone at all. But everyone saw her name [on her shirt,] so people would say ‘Go Ellie!’ and you felt that they were there to cheer you on.”