KidneyNation spotlight: going the extra (26.2) miles

This month, Ellie plans to run 26.2 miles in the 2021 San Francisco Marathon. She has only a short time left to train for the event and meet her fundraising goal of $26,200 (a nod to the 26.2-mile marathon) through KidneyNation, the American Kidney Fund's (AKF) do-it-yourself fundraising platform. Ellie has already made impressive strides toward meeting her goal by getting the word out on Instagram and sending emails to her friends, neighbors and many teammates.

Ellie comes from a family of athletes, and in addition to running, she also plays competitive lacrosse and field hockey. Her mother, Amy, has so far completed five marathons and is training for her sixth so she can run with Ellie in the San Francisco Marathon as well. "She wasn't sure if she wanted to run another marathon, but I helped convince her," says Ellie. "I think I always knew I wanted to follow in her footsteps."

Ellie's first running event was in the second grade, when she joined some of her family members in her neighborhood's Turkey Trot, an easygoing five-mile race held every year on Thanksgiving. "It seems a little silly now that I was so nervous for it," she remembers.

She has been following a disciplined 16-week training plan to get ready for the marathon, waking up before 5 a.m. to go on progressively longer runs with her mom. Because the San Francisco Marathon is known for its punishing hills, she often makes sure to run through hilly terrain in the D.C. area.

Nearing the end of these long runs, she says, "sometimes I'm thinking 'my legs are really sore right now.' But I try to think about how lucky I am able to run when there are so many people who physically cannot, especially those with kidney disease."

Five years ago, Ellie found out she has focal segmental glomerulosclerosis (FSGS), a rare disease that causes scar tissue to develop on the parts of the kidneys that filter blood and can lead to kidney failure. In November 2016, she came down with a bad case of pneumonia and was taken into the hospital when her parents noticed that her eyes were swollen, which seemed unusual. After a urine test showed her kidneys were not working well, she was referred to a nephrologist to get a kidney biopsy, and later had to stay multiple nights in the hospital throughout December.

"I was anxious that I wouldn't be let out of the hospital in time for Christmas," she says. Fortunately, she was released from the hospital on Christmas Eve 2016, feeling frail but relieved. When her lacrosse teammates found out that she wouldn't be able to join them at practice for a month, they visited her at home to cheer her up and bring her gifts.

Ellie takes pills for her FSGS every morning and evening. She also gets regular blood tests and recently had one blood infusion. In the months following her kidney biopsy, she was told to avoid eating sugar, which she remembers was "a little upsetting" given her January birthday, when she had planned on eating cake.

Now that she is able to eat most foods again, she is able to focus on making sure she gets the nutrients and calories she needs for marathon training. "My go-to before every long run is spaghetti and meatballs," she says. She often writes about her pre-training breakfasts, which usually consist of peanut butter toast with coffee, in her regular fundraising updates.

Even though Ellie has not met very many people with kidney disease, she is excited to be able to help others by doing something she loves. "Every single donation is being contributed to AKF, and any type of fundraising is helpful," she said, making it clear that the running-a-marathon part is optional.

She expects to be a little nervous the morning of the big race but is confident she will be prepared to run the distance. "As soon as I get going, I realize that I know what I'm doing. It's the same thing I do every day!"