Maggie Rieber and her mother, Robin Roberts, sat at a round table in the middle of a large conference room. In front of her was a small, yellow notepad. Every few minutes, she nodded her head and added another detail to a growing list on the page.
“This conference is great,” Rieber said. “The sessions are really interesting and I’m learning so much.”
The 39-year-old, who attended the Mesothelioma Applied Research Foundation’s International Symposium on Malignant Mesothelioma for the first time this year, already knows quite a bit about the disease. In 2015, doctors diagnosed Rieber with two forms of this rare cancer: malignant pleural and pericardial mesothelioma.
Since then, she’s been through four rounds of chemotherapy and a surgery known as pleurectomy decortication, during which doctors removed tumors in the lining of her right lung and heart. She came to the conference to learn more about the latest mesothelioma research and treatment options and to connect with other mesothelioma patients.
A Common Community
Just a few tables away, Chris Ford and his wife Vicki, who was diagnosed with pleural mesothelioma in February 2018, chatted with other cancer survivors and their families. This was the couple’s second conference — they attended the Meso Foundation’s symposium last October in New York City.
“The first time we were overwhelmed with too much information,” Chris said. “This one, we’re more involved.”
Like Maggie, Vicki Ford’s treatment included chemotherapy and pleurectomy decortication surgery. She’s still recovering but has taken on the role of Volunteer Event Coordinator for the Meso Foundation, and she seems to have boundless energy.
“Fighting mesothelioma isn’t easy,” she said. “I just want to be a rainbow in someone else’s cloud.”
Vicki and Chris also took detailed notes during the sessions, walking around and introducing themselves to different doctors and researchers to share their story.
“We love seeing how the clinical trials are advancing,” Chris said. “It’s interesting to hear all the research and data coming out of it and where they are going in the future.”
New Information and Continuing Education
The International Symposium on Malignant Mesothelioma, held at the Hyatt Regency hotel in Bethesda, Maryland, lasted for three days, from March 25th–27th. Nearly 200 people attended, choosing from more than two dozen sessions with medical professionals, researchers, lawyers, caregivers, and survivors.
Topics included the latest clinical trials, disease screening and diagnostics, support groups, activism, and advice on seeking legal compensation.
On Tuesday, the Meso Foundation hosted a day-long workshop with conference speakers, patients, and the Centers for Disease Control and Prevention (CDC) to discuss creating a national mesothelioma patient registry. Earlier this year, Congress allocated $100,000 to fund a ‘feasibility study’ for that registry — a win for the Meso Foundation, which started lobbying for a national database in 2015.
The goal: to gather data from all patients diagnosed with mesothelioma and place this information in a centralized database, or national registry, at the CDC. A well-maintained registry would provide medical professionals, public health experts, and researchers with valuable tools to monitor disease trends, develop new studies, and design more effective treatment plans.
Awards Banquet Offers Hope
For many attendees, the highlight was Monday night’s awards banquet. The Meso Foundation recognized a small group of influencers who have impacted the mesothelioma community: a superstar volunteer, a doctor, a lobbying organization, and the director of an insulator’s union.
At the end of the ceremony, mesothelioma patients at each table stood up and announced the number of months or years since their diagnosis. The biggest survivor milestone: 21 years.
The Fords walked out smiling.
“The banquet made me feel like there was so much hope,” Vicki said. “I may be one year, one month, and four days out, but it gave me hope that I can make it to 21 years.”
Maggie Rieber had similar feelings. She sat quietly with a huge smile and tears in her eyes.
“I’m looking around seeing all these survivors and it’s inspiring,” Rieber said. “I lost my career and have felt really isolated, but the foundation has helped create a community for me where there wasn’t one before.”