The Foundation for Sarcoidosis Research (FSR) is searching for volunteers to join its advocacy program, designed to support the sarcoidosis community in a number of ways, from raising awareness to coaching other advocates to providing one-on-one support to patients and caregivers. The program consists of three advocate roles:…

In the first three months of the year, I’ve lost friends due to various illnesses — none of them primarily because of age — and I’ve worried about some other friends’ troubling health. All of this has made me reflect on the time I have left, given that…

I was unexpectedly hospitalized in February 2020 after several days of feeling weak and more out of breath than usual. Given my pulmonary sarcoidosis, my healthcare team decided to admit me for observation. I had spent the previous month being tested and evaluated for a lung transplant. I…

For the past few months, I’ve been having a lot of pain around my ribs. I may have dislocated a rib, causing everything in the area to tense up in response (I’ve done that before), or it could be costochondritis (inflammation in the connective tissue around the ribs), which is…

Last weekend in New York City offered a combination of past, present, and future, at least in terms of the weather. We had sub-freezing temperatures with rain and snow, a late sunset due to daylight saving time, and a sunny day that served as a reminder that spring is upon…

I’ve recognized that I have a huge problem. I recently had an appointment with my new cardiologist’s nurse practitioner. A few weeks prior, I’d had an echocardiogram to determine how my pulmonary sarcoidosis is affecting my cardiovascular system. The results were pretty good considering the condition of…

aTyr Pharma has received positive feedback from the U.S. Food and Drug Administration (FDA) in a meeting to discuss the regulatory development of its lead candidate, efzofitimod (ATYR1923), for the treatment of pulmonary sarcoidosis. After a review of data provided by aTyr, including results from a recently completed…

Navigating children, a spouse, and pets in one house is hard, especially when we’re all there at the same time. Sometimes we’re together all day. If someone told me this could happen 20 years ago, I’d have called them a liar and it a deal breaker. I couldn’t imagine that…

The Foundation for Sarcoidosis Research (FSR) is now accepting applications for fellowships supporting early career clinicians and researchers focused on sarcoidosis. The deadline is March 15, the foundation announced. The two-year grants will provide a total of $150,000 to selected fellows, with…

As I type this, I have 13 tabs open in my browser. I’ve been working on advocacy campaigns for the Arthritis Foundation and the RareAction Network, preparing for Rare Disease Week meetings with my members of Congress, reading other perspectives on Rare Disease Day, checking three different email addresses,…