Outrunning Rare Diseases with Coca

In September of 2021, one Rockland eighth grader received a diagnosis no eighth grader should ever receive. Carlos “Coca” Bernard was diagnosed with leukemia. 

Two years later, Coca and his family received yet another blow when Coca was diagnosed with a rare autoimmune disease called Atypical hemolytic uremic syndrome (aHUS). In an interview with the RCT, Coca described aHUS as the result of a portion of his immune system attacking everything it can. In a body without aHUS, there are structures in place to ensure the immune system does not attack its own blood or kidneys, but those systems do not exist in individuals with aHUS. The aHUS Foundation estimates that less than 625 people in the United States are diagnosed with aHUS, making Coca even more one-of-a-kind. 

While undergoing treatment for his leukemia, Make-A-Wish of Hudson Valley in Tarrytown reached out to  Coca offering a wish. Coca grappled with this, unsure of what he wanted to use his wish for. “I never really thought I deserved a wish,” the 16 year old stated. Because of this, Coca put his wish on hold. 

After he was diagnosed with aHUS, Coca was contacted once again by Make-A-Wish. Coca remembered the team saying that if he wasn’t sure what to do with his wish, he could use it to help other people. With that, a light went off in Coca’s head.

Coca had recently run his very first 5K with his father, and while at the race he had encountered a woman who told the story of how she had organized a run for her friend with breast cancer. After talking with Make-A-Wish, Coca found himself thinking “Why don’t I organize a 5K race to raise awareness for cancer?”

His idea had turned from a simple light to a total firework show of inspiration. Coca would raise awareness and funds not only for cancer or his rare disease, but for awareness of rare diseases in general. “I think it’s a big misconception that rare diseases are just for a small minority of people, but it [affects] thousands of people.” 

Coca recalled a time before his diagnosis of aHUS, a time marked by long hours that grew into days that lengthened into weeks as he grew sicker and sicker without answers. He knows he is not the only one who has been affected by the fear and uncertainty that gripped him and his family, and has now transformed that knowledge into a tangible way to give back.

When Coca decided to use his wish to raise awareness, neither him nor his family realized the logistics that go into planning a 5K and 10K. Thankfully, Make-A-Wish hired Travis from Bishop’s Events, an LLC that organizes charity runs. Make-A-Wish paid Travis’ event planning fee and all of the associated fees that accompany a large event, allowing for every penny of sponsorship money to go directly to the non-profit Global Genes. The Global Genes mission is to eliminate the burdens that patients and families face after being diagnosed with a rare disease. 

Much like how the pink ribbon represents breast cancer awareness, the zebra ribbon on the Coca Strong logo represents rare diseases. Medical professionals are often advised to think of horses, not zebras, when they “hear hoofbeats”. It’s a reminder that usually the answer is a common one, not a rare one. According to the National Organization for Rare Disorders, one in ten Americans live with a rare disease, making these “zebras” more common than most would think. 

The name Coca Strong originates from the Instagram page Coca’s parents used to update friends and family on Coca’s cancer treatment journey. Now, the page has evolved to showcase the importance of awareness around rare diseases, as well as Coca’s fantastic sense of humor he uses to encourage people to sign up. Readers can go to @coca.strong to crack a smile and sign up to support rare diseases at the Coca Strong 5K. 

Even if you are more of a walker than a runner, Coca welcomes you to his 5K and 10K. “You absolutely do not have to run it. You could walk it. You could just show up… It’s really just giving support to the rare disease community.” There will also be prizes and staggered start times for the running-inclined to make the event as inclusive as possible. 

Coca has seen firsthand the kind of support Rocklanders provide when one of their own reaches out. “I think the greatest surprise that I’ve faced…is how generous people are,” said Coca. “Every single person I’ve met and talked to has been so generous and just wants to help as much as they can.”

The race will take place August 3rd at Rockland Lake. No Instagram? No problem! Search “Bishop’s Events Coca Strong 5K and 10K” to sign up, or email cocastrong5k@gmail.com for assistance.

Coca isn’t satisfied with just one race. He is hopeful to keep the Coca Strong race going for years to come to continue his mission of increasing awareness surrounding rare diseases.