Registry-based Research Has Started, Pulmonary Fibrosis Foundation Announces at Summit

The first research projects using data from the Pulmonary Fibrosis Foundation’s Patient Registry are under way, the foundation announced at an international conference in Nashville that bears its name. A record 895 people attended the Pulmonary Fibrosis Foundation Summit Nov. 9-11, where doctors and scientists discussed the latest developments in the field.

In my more recent columns, I have been writing about wrestling with end-stage pulmonary fibrosis and sharing my experience with seeking palliative care. As you can tell, I like planning ahead to take care of my own needs and the needs of my loved ones. My…

The National Organization for Rare Disorders (NORD) says it’s “disappointed and dismayed” after the House of Representatives voted 227-205 last week to repeal the Orphan Drug Tax Credit as part of a U.S. tax reform package. A similar package before the Senate Finance Committee does not repeal the credit…

The Montefiore Einstein Center for Heart & Vascular Care has started a lung transplant program, joining an exclusive group of premier surgical programs in New York. Surgeons at the center will focus on people with conditions like pulmonary fibrosis, cystic fibrosis, emphysema and rheumatic diseases. The United Network for…

According to the Cystic Fibrosis Foundation, there are seven major airway clearance techniques (ACTs) for patients with lung disease. Airway clearance is needed to help clear away mucus from the lungs to help prevent infections and to improve lung function. Children will need an adult to assist with ACTs, and…

Since the beautiful season of fall has embraced us in southwestern Ontario, so has cold and flu season. Between the seasons changing and the kids going to school, there is an entirely new environment to breed germs, and I am hearing of more and more people catching a…

Despite the availability of approved antifibrotic treatments for idiopathic pulmonary fibrosis (IPF), many patients in Europe do not receive them, partly due to a lack of awareness by physicians or a preference for a “wait and watch” approach in people with stable or milder disease, a survey reveals. Better education…

Inhibiting an inflammation-promoting enzyme known as sialidase slowed lung tissue scarring in mice with pulmonary fibrosis, a study shows. The research indicated that sialidase inhibitors, such as Tamiflu, could be used to treat idiopathic pulmonary fibrosis, or IPF. The underlying causes of fibrosis in diseases such as IPF and asthma are still…

As the seasons slowly change here in Southwestern Ontario and we welcome the beauty of fall, I can’t help but reflect on this past summer. It was filled with some happy memories, but also hard times as my disease progressed and my lungs struggled with the heat and…

With the weather getting colder and the holidays around the corner, many of us are thinking about vacations and traveling. While traveling with a lung disease does require some careful consideration, having a lung disease doesn’t mean that you have to be confined to the house. The…