Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…
Advocates Can Try for Grants Ahead of Rare Disease Week on Capitol Hill
Note: This story was updated June 11, 2021, to clarify the Chan Zuckerberg Initiative supported the Human Cell Atlas Project, in addition to other scientific initiatives. Researchers have created a comprehensive blueprint of healthy lung vascular cells, whose dysfunction is associated with pulmonary fibrosis (PF) and other lung…
When I write about my lung transplant, I honor my donor, for whom I am forever grateful. I didn’t know him, but I know he was a caring person. Last August, I was the lucky recipient of his lungs, which changed my life like nothing else has, or ever…
One of the most important blessings in life is having a strong support group. A support team may consist of family members, friends, or a community of people. My support team included three of the greatest people in my life: my husband, daughter, and mother. It is important…
Scientists have found a small molecule, called ISRIB, that was able to reduce fibrosis (scarring) and other disease-related features in mice with induced pulmonary fibrosis (PF). ISRIB successfully enhanced the repair process in lung cells that is altered in PF, especially…
Progressive lung diseases like pulmonary fibrosis cause ripple effects throughout the body. In PF, lung scarring prevents the organs from exchanging gases correctly, resulting in oxygen deficits known as hypoxemia and hypoxia. Chronic hypoxemia, or low oxygen levels in the blood, affects all parts of the body.
An experimental therapy that proved ineffective in treating HIV infections now has shown promising potential at preventing or limiting pulmonary fibrosis (PF) caused by SARS-CoV-2, the virus that causes COVID-19. That finding, from a mouse model of induced PF, was detailed in the study  “Targeting RUNX1…
While you can’t predict an emergency, it helps to be prepared for one. Most young adults haven’t had to think about whom to notify during a medical emergency, but I have as a result of my idiopathic pulmonary fibrosis. Two years ago, I published a column about the importance for…
My mom, Diana, relied on a plug-in oxygen machine to breathe, and the power was going to be shut off for days. This was back in the late summer of 2019, when she was still on the lung…
DWN12088, an investigational therapy for idiopathic pulmonary fibrosis (IPF), showed promising anti-fibrotic properties and appeared to be safe and well-tolerated in a recently-completed Phase 1 clinical trial that enrolled healthy volunteers. Daewoong Pharmaceutical, the therapy’s developer, now plans to start a Phase 2 trial later this year. “We…
