Ependymoma Foundation Informs and Inspires a Rare Cancer Community
February 26, 2019, by NCI-CONNECT Staff
Kimberly Wallgren shares how her father’s cancer inspired a non-profit to educate and connect people living with ependymoma.
In March 2007, the Collaborative Ependymoma Research Network (CERN) Foundation held its first meeting. Clinicians, researchers, and family of ependymoma survivor, Dallas Mathile, gathered to discuss how they could impact the lives of people with ependymoma, a rare central nervous system (CNS) cancer.
This effort was led by neuro-oncologist Mark Gilbert, M.D., now chief of NCI’s Center for Cancer Research (CCR), Neuro-Oncology Branch, who asked other experts willing to collaborate to join him. These leaders continue to be CERN advisors today. And the effort to start the foundation was and generously supported by the Mathile family.
Among the attendees at the first CERN meeting was Kimberly Wallgren, Dallas’ daughter. “We knew then we needed to put a community framework around this rare disease and tell the story of what researchers were doing,” says Wallgren, now president of the CERN Foundation. “It was so hopeful to know there were extremely talented and dedicated people committed to investigating ependymoma and looking for innovative ways to engage the rare disease community.”
The CERN Foundation quickly became the premier resource for people living with ependymoma. It offers patients and families educational and clinical trials information, support resources, and ways to participate.
Building Awareness and Outreach
Wallgren knew the first step to reaching people and creating a community was to build a platform for people to interact and communicate critical information. Thus, the CERN Foundation launched a website. It immediately became the go-to for patients newly diagnosed through recurrence and survivorship. It remains to be a top resource today.
Wallgren also knew the website needed to focus on the individual experience of ependymoma. She understands first hand that families will first want to learn about their diagnosis. More, they will want to understand ependymoma terminology.
Wallgren’s father was first diagnosed in 2002 and had a recurrence in 2006. “When my dad was first diagnosed, there was almost no information available and my parents were grasping for anything about the disease. Not much turned up, ” says Wallgren.
The website specifically includes educational information on ependymoma basics, diagnosis, treatments, clinical trials, recurrence, symptom management, support and resources. And it provides all of that information in a free ependymoma guide for patients, caregivers, and advocates.
“There is a major trust factor that we establish with visitors to our website. And we don’t hold that responsibility lightly,” says Wallgren. “We do our best to communicate important information in an easy to understand manor in order to empower family and friends along their experience with the disease.”
The website includes referral information to help families find the best care for their loved one. This includes helping families get a second opinion, so they can understand available treatment and clinical trial options. Wallgren personally communicates with patients and families. She answers questions and helps people navigate finding second opinions at centers with a neuro-oncology program that meets their needs. The foundation utilizes its network of physicians and centers to refer patients.
The CERN Foundation also facilitates physician to physician consultations through its network. “CERN has a collaborative spirit and we expect that from our team members. Our intent is to serve both the pediatric and adult patient and medical communities,” says Wallgren.
Last, people living with ependymoma want to connect with others going through the same experience. The CERN Foundation is active on Facebook and Twitter, shares inspirational stories, and hosts an awareness day event.
Getting the Community Involved
Ependymoma Awareness Day started in 2012 with a mass butterfly release taking place at the semi-annual CERN Foundation investigator meeting. The annual Ependymoma Awareness Day, now in its eighth year and taking place in May in Washington, D.C., is held in collaboration with the National Brain Tumor Society to inspire and give hope to the brain tumor community.
“Awareness day is an awesome experience because it’s a huge vehicle to strengthen the community. We bring together scientists, clinicians, patients, caregivers, and advocates to work together and bridge gaps,” says Wallgren. The event epitomizes the goal of the CERN Foundation community outreach programs – to have a positive impact on people living with ependymoma.
Another community initiative to focus on patient outcomes started as the Ependymoma Outcomes Project, led by Terri Armstrong, deputy chief of NCI’s CCR, Neuro-Oncology Branch. The success of the online survey led to the current Outcomes and Risk Project for people with rare CNS cancers as part of NCI-CONNECT. It aims to improve the understanding of risk factors associated with rare CNS cancers, including ependymoma.
“Our partnership with NCI-CONNECT brings so much hope because it is taking research to new levels, beyond the capabilities of any one group,” says Wallgren. “And it is exciting that we have a voice in its patient-focused projects and research efforts. Collaboration is what will enable a vision to become a reality.”
Through all its activities, the CERN Foundation is making the voice of people living with ependymoma prominent and distinguishable. And the scientific and clinical communities are listening. The participation of patients and families is key to advance research.
We all have a role in this journey. No role is too small or insignificant. Each interaction is meaningful, and collectively we will change the future outcome.