COEUR d’ALENE - For Katie Stevens, her job as CEO of Team Telomere can mean life or death when it comes to getting information to the public, so she hosted an open house at Seasons of Coeur d’Alene Fresh Bar & Grill on Friday to reach out to the community.

“It’s my job now to go around to rural communities and educate physicians,” Stevens said. “I go around to conferences and educate physicians on why they need to test for Telomere’s biology disorder, and why they need to look for this, because if you’re not giving them the proper treatment, you’re not giving them a chance at life.”

Stevens is not a doctor, but she’s become an expert on her son's rare biology disorder since he was diagnosed in 2012, and has made it her life’s work to help other parents do the same.

Team Telomere is a nonprofit that advocates for funding, research and awareness of Telomere’s disease, Stevens said. The company helped Stevens find her son’s bone marrow transplant treatment in Boston, which saved his life, and now it’s her passion to help other parents find help. She’s moving the international organization’s headquarters to Coeur d’Alene, and she wants everyone to know about it.

“One in 10 people are diagnosed with a rare disease, and half of those are children,” Stevens said. Her own son, who wasn’t expected to live past 6 years old, is now 22 and without current symptoms. But there isn’t a cure yet for his disorder.

Team Telomere hosted the open house in partnership with Hope Education Consulting's owner, Honey Sayler. Sayler’s daughter, Grace, was born with Noonan’s Syndrome, a rare genetic disease with limited research, and in Sayler’s case, a potentially grim prognosis, so she’s become an advocate too.

Grace’s heart was overworking itself and began to close up her left ventricle when she was just 11 weeks old, and Sayler didn’t know what to do. She’d found new research for experimental treatments in New York, but she couldn’t get her cardiologist to write her a referral when she brought it to him. He’d say it was risky or had too many side effects, but Grace had a 20% chance of survival at that time.

“I wanted to teach Honey how to advocate, fund research and get involved in the local community and to see how that can change her life,” Stevens said. “Our common thread is we have something that no one has ever heard of.”

People were invited to attend the open house to share their stories over cocktails and appetizers, or enter to win raffle prizes, and of course to donate to the nonprofit to fund further research.

Stevens and Sayler have both had to navigate the complex web of doctor’s appointments, health insurance paperwork, medications and the emotional trauma of having a child who could die of an incredibly rare and misunderstood diagnosis. And now they collaborate to help other people navigate the complex world.

“We’re here and partnering because I think we’re better together,” Stevens said.