This week marks the launch of the “7,000 Mile Rare Movement,” a nationwide effort to raise money for research into the 7,000 known rare diseases that afflict at least 30 million Americans. The campaign kicks off Feb. 1 and culminates with Rare Disease Day on Feb. 28. Organized by…
NORD Fundraiser Sets 7,000-Mile ‘Bike, Run or Walk’ Goal for 7,000 Rare Diseases
I had a scare when using oxygen last week. It’s not unusual to have my oxygen levels off target from kinks in my cords. And I’ve accidentally set the liters-per-minute dial too low. But last week was different. I was getting ready to go to a massage appointment.
For many people, using mindfulness as a means to eliminate or reduce stress is a new concept. It seems as though the importance of mindfulness is only now being promoted across health care, literature, social media and through holistic wellness advocates. There are now wellness centers attached to medical facilities, such…
I have never in my life assumed that caregiving for a loved one was easy. I also have never been a primary caregiver, meaning the first person providing care to someone who is chronically ill. I have, however, been a temporary caregiver when family members recovered from surgery…
Members of an unusual singing group in Bristol, England, are not just having fun, but learning more about their lung diseases. In addition to helping them explore breathing and breathlessness, it’s helping researchers learn about the disorders as well. The group, which includes pulmonary fibrosis patients, is part of a…
Advanced Interactive Response Systems (AIRS), Owlstone Medical and patientMpower are the three winners of the $1 million IPF Catalyst Challenge presented by Three Lakes Partners, a philanthropy organization financing research of idiopathic pulmonary fibrosis (IPF). The three winners will receive $333,333 each to develop their projects. Level Ex received the competition’s Audience…
Two years ago today, an inspirational young woman with whom I had the privilege of working for several years passed away. She died of an incurable cancer that no one should ever have to face. While fighting this ginormous battle, she exhibited the most compassion, selflessness, and…
https://www.youtube.com/watch?v=Jy7f9wATrlI This video from Adam Karm titled “The Best Mom in the World” is all about the Packer family. Thirty-three-year-old Stephanie Packer was diagnosed with diffuse scleroderma in 2012 and now, as a result, suffers from pulmonary fibrosis. MORE: How to better manage your pulmonary fibrosis…
A project that aims to develop a new system to deliver therapies specifically to the lungs of patients with pulmonary fibrosis (PF) was awarded a research grant by the University of Pittsburgh’s Center for Medical Innovation. The funding was part of the center’s 2017 Round 2 Pilot Funding Program…
For most people, a new year brings new opportunities and often, a strong desire to bring on changes and try to achieve new goals. Some make those goals about physical changes, while others might look at social goals. Some may choose mental or emotional health improvements, such as striving for…
