Setting Out to Cure TBM
MARCH 20, 2018
A BIDMC patient’s ‘Cure TBM’ foundation raises funds and awareness of a rare lung condition treated by BIDMC experts.
Jennifer Champy searched for years for relief from a debilitating lung condition before experts at BIDMC diagnosed her with tracheobronchomalacia (TBM), a rare condition that causes airways to weaken and collapse. Now, after successful surgery and treatment at BIDMC’s Chest Disease Center, she has founded a nonprofit organization called Cure TBM to give back.
“Before I came to BIDMC, I was put on a bridge to hospice several times and was told there was nothing that could be done,” Champy said. “My BIDMC team gave me the gift of life.”
As a resident of Columbia, South Carolina, Champy had flown all over the country in search of hope. She had just received disappointing news from another team of doctors when a Google search turned up BIDMC’s Sidhu Gangadharan, MD, Chief, Division of Thoracic Surgery and Interventional Pulmonology, and Adnan Majid, MD, Director, Interventional Pulmonary.
“Patients like Jennifer who suffer from TBM often go years being misdiagnosed with asthma or COPD, without much success in treatments,” said Majid.
TBM treatment depends on the severity of the condition—some individuals may benefit from mild or moderate treatments, such as medication, rehabilitation or special devices to improve breathing. But Champy’s case was much more severe.
She showed encouraging signs of improved breathing after a stent trial, a temporary procedure that prevents airways from collapsing. She later underwent a procedure called tracheobronchoplasty, which permanently stabilizes the airways.
She continues to recover, while word of her successful operation continues to spread like wildfire. After a local news channel shared her story, BIDMC’s Chest Disease Center received a multitude of inquiries from patients desperate for help with their respiratory issues, and a growing number of patients have been diagnosed with TBM.
Champy’s Cure TBM foundation is increasing awareness and raising money to support innovative research to help improve outcomes for patients with TBM.
“We hope to someday make TBM as commonly known as other diagnoses, like asthma,” Champy said.
Cure TBM has heard from hundreds of people in the past two years who are looking for answers to their unsolved airway issues. Patients from all over the world are now reaching out to BIDMC to seek care.
And although Cure TBM’s fundraising is dedicated strictly to research and education, Champy’s growing network supports patients in need in other important ways.
“Friends and social media followers support Cure TBM by donating air mileage so that patients can get to Boston,” she said. “To date, 36 airline tickets have generously been donated so that those suffering can come see the best in the business — BIDMC’s TBM team.”
Most recently, Cure TBM has formed a pediatrics division, in partnership with Boston’s Children’s Hospital.
“We are grateful for Jennifer’s advocacy and passion to help other patients with TBM,” Gangadharan noted. “It goes without saying that the cure for this disease will not be possible without patients playing a key role in supporting the community and keeping the focus on each individual patient with this debilitating disease. A foundation that can effectively promote innovation for TBM is truly exceptional.”
Learn more about Cure TBM at curetbm.org.