A Hero of Hope
Hero of Hope
Ellie Hanley ’22 is honored by the American Kidney Foundation
BY MELISSA ULSAKER MAAS ’76
Every year the American Kidney Foundation (AKF) holds The Hope Affair gala to honor the inspirational individuals who fight kidney disease every day and to celebrate the courage, commitment, and passion shown by patients, caregivers, health professionals, advocates, and innovators who work to improve health outcomes. This year at the 14th annual gala on October 19, Ellie Hanley ’22 was honored as a Hero of Hope for running a marathon and raising more than $27,000 to give back to kidney disease research.
When Ellie was in the sixth grade, she came down with a bad case of pneumonia and woke up one morning with very swollen eyes. Her parents, Amy and John, took her to the hospital where they discovered her kidneys were not working well. She was referred to a nephrologist, who performed a biopsy just before Christmas, She was diagnosed with focal segmental glomerulosclerosis (FSGS) in January 2016. This rare kidney disease causes scar tissue to develop on the parts of the kidneys that filter blood and can lead to kidney failure. The diagnosis was a shock to Ellie and her family, and they still don’t know what caused it.
Despite being on a daily regimen of 15 pills and having occasional infusions to stay on top of her condition, Ellie never let FSGS affect her studies or her performance on the field. She is quietly confident and approaches life with a positive attitude. She was salutatorian of the Class of 2022 and received the Helene Haskin Krause Award, an award presented to a senior athlete who has demonstrated excellence both in their academic work and athletics. “While my diagnosis was a pretty dramatic event that I have to face every day, taking the medication and never really knowing exactly what it means for the current state of my kidneys, I feel really fortunate that it doesn’t prohibit me further,” Ellie said. “Over the years I’ve learned more about my kidney disease and discovered how many people my age with the same condition are not only unable to participate in any sports, but also are living on dialysis in the hospital. It makes me feel fortunate and grateful and that’s why I wanted to give back in some way.”
Ellie comes from a family of athletes, and she played competitive field hockey and lacrosse from a young age. Her older sister, Bridget ’20, plays lacrosse for Colorado College and her younger sister, Claire ’25, plays on the varsity tennis team and also started an SSSAS Girls on the Run program. Running was part of Ellie’s athletic training and something that she’s always enjoyed. Inspired by her mom, who had completed five marathons, Ellie had thoughts of following in her footsteps. “I knew that I wanted to run a marathon at some point, and then the idea of combining a marathon with fundraising for AKF started to develop,” Ellie said. “Towards the end of my sophomore year I signed up for the San Francisco Marathon, because it was one of the few marathons run in August. It lined up perfectly between the end of my summer lacrosse season and the beginning of field hockey, but COVID intervened and the marathon was postponed until September 2021.”
Determined to follow through despite the change in timing, Ellie registered again in January of 2021. In April, about a month before she started her 16 weeks of training, she reached out to AKF. “I wanted to see if there was anything they could do to help me with the fundraising aspect,” Ellie recalled. “They were amazing and helped me set up my own donation page on their website, which included a place to tell my story and blog about my journey.” Her fundraising goal was $26,200—$1,000 for every mile. The day she started her training, Ellie emailed her friends and family, the Saints community, and acquaintances from all the sports teams she had been on to launch her page. “Lots of people reached out and told me they were sharing it, and from there it just kind of spread,” Ellie said. Ultimately, more than 100 sponsors helped her exceed her goal, raising $27,604.
The only organized race Ellie had ever run before was her neighborhood five-mile Turkey Trot on Thanksgiving. Undaunted, she created a disciplined training plan, getting up before 5 a.m. to run with her mom, who Ellie says “needed a little convincing to join her.” Ellie finished her first week with a tough eight-mile run. In preparation for the grueling hills in San Francisco, they made sure to run through hilly terrain on their progressively longer runs. Ellie sat down regularly to blog about her training on her AKF web page.
When the big day came, Ellie was ready. “It starts off with six miles that are pretty flat,” Ellie said. “Then you climb up the Golden Gate Bridge and cross to Sausalito where you run one mile downhill. That’s where you realize how hard the hills are going to be!” Ellie’s playlist for the run was “a very long, crafted playlist,” but her AirPods died and she ran without music for the last few miles. “It was so much fun,” Ellie said with a grin. “I got separated from my mom around the 13-mile mark, but it was a really cool feeling to be running alone absorbing the energy of the city. I remember getting really tired, but I had my name on my race bib and could hear people calling out, ‘Go Ellie.’” And she did, all the way to the finish line.
During the summer the AKF sent a film crew to Alexandria to shoot a video of Ellie to be shown at The Hope Affair gala. They shared many other stories of different kidney patients, and Ellie recalled seeing her story for the first time. “The gala was an unforgettable experience. I hadn’t seen the video and I was backstage while they were showing it, but they had a little screen for me to watch it on right before going onstage. It was really incredible to be honored and part of the event.” At the conclusion of the video, her father expresses hope for Ellie’s future. “Obviously, we never wanted her to go on this journey, but for her to turn a negative into a positive—I think is a really encouraging sign that she’s going to be okay.”
Claire Hanley ’25 back left and Elisabeth Carroll ’25 with the Girls on the Run.
All in the Family: Serving through Running
Claire Hanley ’25, caught the running bug from her mom and big sister, Ellie. She was so inspired, she went out for winter track last year and signed up for two local half marathons. As her love for running grew, so did her desire to share it in some way at school.
“I thought starting a Girls on the Run program at SSSAS would enable me to share my passion with other people,” Claire says with great enthusiasm. “I babysit and love being with little kids.”
Girls on the Run was started in Charlotte, N.C., in 1996, to help strengthen the confidence of young girls and underscore the important connection between physical and emotional health. In addition, the program places an emphasis on developing character, caring, and competence through lessons that include running and other physical exercises.
The program requires an adult supervisor, so Claire sought help in the Saints community. Three Lower School teachers stepped up to help her create and run the program, Franny Alston (third grade), Michelle Bruch (science), and Megan Grant (fourth grade). Saints parents Natalie Stemp and Jennifer Strickland also offered coaching assistance. When they sent out word that the program was available, more than 30 girls signed up.
Leading the program is not a small commitment. The ultimate goal was preparing for a Girls on the Run 5k on November 20, but there is more to it than running. “We have practices twice a week after school, during which we not only do running activities but also activities that teach them how to have a balanced lifestyle,” Claire explains. “Each practice has a different theme. It could be an activity focused on meditation, bonding, friendship, stretching, or a fun game, but it always ties back to the central theme. The program includes a service component, so the girls made baskets for children in the hospital and toys for animals in the shelter.”
Claire feels it’s been an amazing leadership opportunity. “It teaches these girls valuable life skills, and I’ve had some very meaningful conversations with some of them. They have good ideas for their age. I enjoy gaining insight into what they have to say, advising them, and collaborating with them. We work together to decide what’s best for our team and ensure everyone is having a good experience.”
So, will Claire do it again? Yes, definitely!