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3 weeks ago | 
sjogrenssyndromenews.com | Marisa Wexler |Margarida Maia |Mary Chapman
April is Sjögren’s Awareness Month, and a U.S.-based nonprofit is gearing up to help the community spread the word about Sjögren’s disease — and the many ways people impacted by this autoimmune condition can get involved. For this year’s awareness month, the Sjögren’s Foundation is inviting supporters to “Connect, Learn, and Thrive” to mark the annual event. Sjögren’s Awareness Month has been held each spring in the U.S. since 1998.
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1 month ago | 
cushingsdiseasenews.com | Andrea Lobo |Paris Dancy |Noura Costany |Mary Chapman
People with Cushing’s disease who have more education are also more likely to have better patient outcomes — including longer survival — than those with lower educational levels, a study in Sweden found. According to the study, which followed individuals with Cushing’s for as long as 20 years before and after diagnosis, nearly all patients experience a decline in employment rate and income, and an increasing rate of disability pension, over time.
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2 months ago | 
pulmonaryfibrosisnews.com | Steve Bryson |Samuel Kirton |Lindsey Shapiro |Mary Chapman
An imbalance in gene activity within two types of immune cells explains why idiopathic pulmonary fibrosis (IPF) progresses but in people who develop lung fibrosis after a severe COVID-19 infection, their lungs get better, a new study finds. Researchers showed mortality risk in IPF and COVID-19 was tied to the increased activity of seven genes in immune monocytes and decreased activity of 43 genes in immune T-cells.
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Jan 17, 2025 | 
pulmonaryfibrosisnews.com | Margarida Maia |Samuel Kirton |Mary Chapman
Broadway performers will sing show tunes at the 15th annual Pulmonary Fibrosis Foundation Broadway Belts for PFF! event, which will be held at New York’s Sony Hall March 10 to raise funds and awareness for pulmonary fibrosis, a disease in which scar tissue forms in the lungs. Tony Award winner Julie Halston, known for her roles in “Our Town” and “Tootsie,” will host the event, which will feature a cocktail reception, a three-course dinner, a live show, and an after-party.
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Nov 29, 2024 | 
cysticfibrosisnewstoday.com | Lara Govendo |Marisa Wexler |Kristin Entler |Mary Chapman
What is cystic fibrosis (CF)? I get asked this question on the regular. My automatic response is: Please don’t search it online. No, really. Just don’t. I equate searching CF online to looking up your symptoms when you’re sick: Both typically result in death. (That’s dark humor.) But truly, search engines offer blanket statements that don’t always apply to individuals. The worst thing is having people make assumptions about my life just because of something they’ve read on the internet.
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Nov 4, 2024 | 
cysticfibrosisnewstoday.com | Marisa Wexler |Hawken Miller |Patricia Inacio |Mary Chapman
Bonnie Ramsey, MD, a pediatrician and researcher who dedicated her career to advancing care for cystic fibrosis (CF), has been selected as the recipient of the 2025 American Pediatric Society (APS) John Howland Award. The APS has been giving this award since the early 1950s to recognize healthcare workers who have made substantial contributions to improving the health of children, and to advancing the profession of pediatrics.
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Oct 15, 2024 | 
cysticfibrosisnewstoday.com | Andrea Lobo |Jennifer Chamberlain |Marisa Wexler |Mary Chapman
The 10th Annual Glow Ride for Cystic Fibrosis (CF), held Sept. 21 at Hermosa Beach, California, exceeded expectations by raising more than $65,700 to support families experiencing financial difficulties due to extended hospital stays. That’s according to Claire’s Place Foundation, a nonprofit that provides support to children with CF and their families.
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Sep 24, 2024 | 
pulmonaryfibrosisnews.com | Samuel Kirton |Lindsey Shapiro |Mary Chapman |Charlene Marshall
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, the disease was a mystery to me. I’ve shared before that when my wife, Susan, and I left the clinic following my diagnosis, we began to search for information from the parking garage. That thirst for knowledge hasn’t changed during my journey. Learning about any rare disease is a lifelong experience.
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Sep 9, 2024 | 
cysticfibrosisnewstoday.com | Patricia Inacio |Mary Chapman |Lindsey Shapiro |Margarida Maia
The Rare Disease Cures Accelerator-Data and Analytics Platform — dubbed RDCA–DAP — has received new datasets that promise to accelerate research and the development of new therapies for cystic fibrosis (CF). The data was generated by the Cystic Fibrosis Therapeutics Development Network (TDN), known for its clinical trials network evaluating the safety and effectiveness of new CF therapies.
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Aug 30, 2024 | 
pulmonaryfibrosisnews.com | Lindsey Shapiro |Samuel Kirton |Charlene Marshall |Mary Chapman
This September, supporters will participate in advocacy, educational, and fundraising activities intended to raise awareness about pulmonary fibrosis (PF) and interstitial lung diseases (ILDs) in honor of PF Awareness Month. As it does each year, the Pulmonary Fibrosis Foundation (PFF) will play a central role in the effort. Its theme this year is “Every Breath, Every Story,” which aims to showcase patient’s individual journeys as a way of motivating supporters to spread the word.
