For 16-year-old Lola Kark, it started with scarlet fever and a strep infection at the age of 9. Even after recovery, the constant ache of her joints, a tired feeling and a rash collecting on her face followed her for two years. Her questions unanswered, she was lost.
“I did not have a diagnosis so it was challenging,” Kark, a student at Santa Fe Prep, writes in an email.
But everything changed at age 11 when she was diagnosed with lupus, an autoimmune disease that can cause inflammation in parts of your body (the skin, joints and internal organs), according to the Lupus Foundation of America. She finally had answers and was ready for treatment. Since then, she has been in remission but has recently started a new treatment for the chronic disease.
“The biggest ongoing effect on my life is that I need to maintain total sun avoidance because the sun’s radiation activates the disease,” Kark writes.
Not only did the disease take a physical toll but an emotional one as well. Kark struggled to find materials to help understand and support her after being diagnosed with the condition.
“I tried to find resources for kids and couldn’t find any. All the websites were focused on adults,” Kark said.
With few education tools that connect with children, she felt the need to kick-start a nonprofit from her own personal experience. “If I can help even one family to get useful information or one kid to feel less alone, it would be worth it,” she said.
The nonprofit, Lupus Kids, was founded in June 2020 and was built from the ground up through donors and its fiscal sponsor, the New Mexico Foundation.
“I am incredibly lucky that Lupus Kids found a home with the New Mexico Foundation and that they also believe in the project,” Kark writes.
Lupus Kids provides an online community for children and families to discover medical care and educational tools to guide them toward a successful and healthy lifestyle. It also aims to raise awareness of autoimmune diseases for people in New Mexico and possibly across the globe. Kark wants to create hope for kids who are in the dark.
“Lupus Kids takes an optimistic approach to help and connect kids while knowing that we will continue our work while other organizations work towards a cure,” Kark writes.
The website, lupuskids.org, provides a variety of resources and information, including what exactly is lupus, the symptoms and how it is treated. It also has links to other helpful websites. The site also provides ways to take action and build community around the nonprofit. This includes a mailing list called the Wolf Cubs.
“When people join the Wolf Cubs they will receive updates about our events, educational materials, and be connected to other Wolf Cubs through our growing network,” Kark writes. She also plans to schedule more activities in the future, including a pen pal program and collaborative poetry or art.
Kark is planning on holding her first fundraising event in September, the Lupus Kids No-sun Evening Walk-a-thon. The outdoor event is aimed at raising awareness while keeping people diagnosed with the condition safe.
“I hope in the future to do more events and eventually raise enough to create a travel fund to help children gain access to doctors,” Kark adds.
For now, her goal is to bring attention to the goals of Lupus Kids. Kark hopes children in New Mexico and elsewhere will find her nonprofit helpful and supportive.
“Seeing kids’ need for this continues to inspire me,” she writes.