Caeli Jojola’s accomplishments over the past decade are extraordinary. She was her high school’s valedictorian. She graduated cum laude with a double major from the University of Notre Dame. She’s in her second year of law school at Harvard University. She fills her spare time volunteering, participating in athletics, and serving in leadership positions in school organizations.
More remarkable is that the 23-year-old native of Jackson, Tennessee, has done it all while living with debilitating endometriosis.
Jojola will push her physical and mental capacity even further as a member of EndoFound’s Team EndoStrong in the New York City Marathon on November 2. She’s part of a team of 50 runners who collectively hope to raise $300,000 for EndoFound’s research, education, and advocacy programs. Jojola has already surpassed her personal $5,000 goal with more than two months until the race.
Click Here To Support Caeli Jojola's Marathon Fundraiser
“I originally was pretty skeptical about running because with endo, there’s always the possibility of a flare-up during training or on race day, and that uncertainty can be paralyzing,” Jojola said. “But I asked my mom and sister in the spring what they thought, and they had no doubt that I could do this. I think their certainty gave me a steadiness I didn’t have on my own, and I’ve taken that with me throughout the training process.”
Jojola’s painful periods began with her first one at 13, and they’ve never relented.
“I was missing classes and sports early on in high school, and without a diagnosis, it was difficult to communicate with teachers and coaches what was happening to me,” Jojola said. “I had a few ER and gynecologist visits, but it was ultimately chalked up to bad period cramps.”
Jojola’s self-motivation and strong relationships with her teachers and coaches enabled her to push through high school and perform at a high level—easier than when she would arrive on Notre Dame’s campus in the fall of 2020. Her symptoms worsened in her freshman year, causing her to miss several classes and exams.
“I couldn’t tell professors what was going on without knowing myself, and it’s a much more formal process you have to go through with the dean of students to rearrange exams and such,” Jojola said. “Saying I don’t feel good once a month without having a diagnosis wasn’t going to cut it.”
She was finally diagnosed in May 2021 through a laparoscopic surgery, at which time the surgeon removed some of the disease. Jojola said the surgery didn’t provide her any physical relief, but it did give her the validation she’d sought for seven years and the drive to keep going.
“The diagnosis enabled me to receive additional excused absences, and I was able to make up exams around a flare-up if I needed to,” she said.
In the fall of 2022, Jojola studied for a semester in Greece. “I remember calling my mom once a month while I was over there and lamenting about the pain,” she said. That’s when she scheduled her second surgery for December of that year, as soon as she returned home. The surgeon removed more endometriosis, along with Jojola’s appendix.
“Unfortunately, my pain hasn’t improved,” she said. Given Jojola’s academic demands over the past few years, she’s yet to have another surgery and is focused on managing the pain while assessing what her next steps will be. “The pain is usually three to four days a month, so I’m on prescription pain meds, and I just lie in bed and wait for it to pass.”
While in Greece and searching for answers to her pain, Jojola discovered EndoFound’s website. She said reading one of the patient blog stories changed her perspective on the prevalence of the disease and made her feel less alone. She also wrote her own blog post for the site in the spring of 2023 to help other women, and this year, she noticed EndoFound’s call for marathon runners.
“When I found out I was selected, the first thing I did was text my middle school cross country coach with, ‘I’m running New York City ... got a plan for me?’ Five minutes later, she sent over a training guide.”
A guide that Jojola greatly appreciated.
“I’d always thought about running a marathon, but I’d never even done a half-marathon,” she said. “The farthest I’d ever run was eight or nine miles when I ran cross country, but I’ve hit 15 now in my training. I’m definitely getting into the longer distances now.”
Jojola said her best friend is running the marathon with her for another charity organization.
“It’s been powerful to share this journey with her,” Jojola said. “This experience is going to be much bigger than what I’m doing. I can’t wait to be there with her and all the runners on race day.”
Jojola’s primary goal is simple:
“Just to enjoy it,” she said. “I talked to one of my friends who’s run multiple marathons and asked her for some training tips, and she said to enjoy every moment of it, even the hard ones. I’m going to celebrate all of the training I’ve put in, all of the advocacy that’s come with it, and my village that has shown up for me. They’ve supported me through not only the training and fundraising, but also over the years by going to doctor’s appointments, checking in on me during flare-ups, and offering encouragement. Endo really demands a village, and mine has shown up for me when I’ve needed it most.”
To support Caeli Jojola in the New York City Marathon with a donation, visit https://give.endofound.org/fundraiser/6264327.
