The other day I was surprised by a knock on my door, and even more surprised to hear the response when I asked who it was. It sounded like he said Jamaal Bowman — my congressman. It even sounded like his voice, which I recognized from countless interviews,…
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The Foundation for Sarcoidosis Research is calling for everyone to participate this month of April in a campaign to celebrate those living with sarcoidosis. This year’s campaign, #SarcoidStories, is an effort to raise awareness among the general public about the daily challenges and joys in the lives of…
I recently took a short weekend trip about 40 miles outside Philadelphia to Kennett Square, Pennsylvania, to visit my brother-in-law. I try to get out to “the country” where he lives about twice a month. We do the “guy” thing: sit around, drink beers, and do nothing. He…
May has not been my favorite month for many years. I lost my mother suddenly over Mother’s Day weekend in 2003, and later lost one of my favorite aunts in May 2006 and my maternal grandmother in May 2007. On May 19, 2018, I suffered a second spontaneous…
Being diagnosed with a chronic illness is humbling! When I was diagnosed with sarcoidosis more than 10 years ago, I didn’t understand much about the condition. It wasn’t until I went for a sleep study that it…
The U.S. Food and Drug Administration has granted orphan drug designation to RLF-100 (aviptadil), Relief Therapeutics’ investigational inhaled therapy for sarcoidosis. Such status is given to treatment candidates with the potential to be safe and effective in rare diseases — defined in the U.S. as those affecting fewer…
My husband and I just celebrated our 23rd wedding anniversary. And our 18th. And our 13th, and our eighth, and our third. While every year is significant, we’ve made it a tradition to get married again every five years, with a new location and theme each time. From Las Vegas…
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,…
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…
All too often, life gets in the way of living. That makes it hard to stick with your life’s plan. Like most people, I had a plan for my future. Growing up, I always knew I wanted to be in a creative field. As early as…