How our Patient Navigator brings resources and connection to chordoma families

Andrea Locke, Patient Navigator

A chordoma diagnosis can be scary and confusing: What is chordoma? What’s the best route for treatment? Are there others with this diagnosis I can talk to? Knowing where to find answers and what to do next can be overwhelming. That’s where Andrea Locke comes in. In her role as our Patient Navigator, she helps chordoma patients and their family members overcome barriers to getting the care they need. She provides information about treatment guidelines, finding qualified doctors, understanding financial assistance programs, and much more.

“I make sure that patients and their loved ones get accurate information to make informed care decisions,” Andrea says. “To be a first point of contact for patients, and to reassure them that the Chordoma Foundation is here to support them — not just through their diagnosis, but along their entire journey through and beyond chordoma — is rewarding.”

In addition to patient navigation, Andrea’s work centers around connecting patients and their families with others who have been through similar journeys. She leads our online community, Chordoma Connections, a private platform for patients and family members to ask questions, seek advice, and bond with others. “It’s a space for us to distribute resources and share updates, while also supporting individuals impacted by chordoma as they come together and build their own personal connections,” she says.

Additionally, through the Peer Connect program, Andrea matches individuals with Peer Guides who can offer one-on-one support and guidance. “What we’ve learned from chordoma patients and family members is how often people feel alone,” she says. “I try to match people with someone whose journey is as similar as possible to their own. The goal is to make sure they have someone who can relate to what they’re going through.”

Shannon Lozinsky, Director of Patient Services, has seen firsthand how Andrea’s efforts have transformed our patient offerings. “We were thrilled when she got here, because we knew she’d be able to quickly scale up our programs and enable many more people to benefit,” Shannon says. “For example, Andrea saw a huge opportunity to improve the way we train Peer Guides, which used to take a whole day in person. She made the training quicker and virtual, leading to a significant increase in Peer Guides, which means we can provide better matches and serve more individuals. What’s more, she integrated her past roles in counseling and education to optimize the skills our Peer Guides learn. Because of Andrea, now when someone is matched with a Peer Guide, they’re not just making a friend — they’re making a connection with someone who is highly skilled.”

Andrea is passionate about serving the chordoma community, which she’s come to know as resilient and resourceful. “I’ve seen how much of a difference patients, caregivers, family, and friends make to each other within the community,” she says.

One of the things Andrea finds most fulfilling about her role is the sense of relief, hope, and agency she’s able to foster. She recently worked with a newly diagnosed patient who was struggling to overcome a myriad of obstacles, which were hindering their ability to get a recommended treatment scheduled. Through several phone calls over the course of a few weeks, Andrea provided the patient with information and encouragement, both of which led to the person feeling empowered and prepared to advocate for what they needed. “After we talked about a suggested plan for next steps, I got a call back a week or so later with an update,” Andrea recalls. “They had spoken directly with a chordoma surgeon, finally got their surgery scheduled, and were even able to get help with lodging and travel. They simply called so I could share in their happiness. It was really moving,” she says, adding: “They were in tears — but this time, it was happy tears.”