A recurring topic of discussion among the rare disease community is whether people would consider donating an organ. I’ve heard varied comments, such as “No one would want any of my organs,” “My only good organ is my transplanted one, and it cannot be reused,” and “I don’t want to…
On Tuesday, Sept. 15, 2020, I received an email asking if I would participate in an exercise on how deceased donor organs are allocated. The opening statement read: “The Organ Procurement and Transplantation Network [OPTN] is developing a more equitable system of allocating deceased donor organs. The new approach, continuous…
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) on Jan. 31, 2017, I quickly understood three things about this disease. First, it’s chronic. Second, it’s progressive, though it progresses at different rates in everyone. Finally, there is no cure. One therapy available for IPF is…
One of the most certain parts of our lives is the order of the calendar. “Thirty days has September,/ April, June, and November,/ All the rest have thirty-one,/ Save February at twenty-eight,/ But leap year, coming once in four,/ February then has one day more.” Some might call this a…
How do you value something that doesn’t have a standard of measure? If you invest in a stock, there is a cost per share. You can see its value at the moment of investment. Over time, you’ll witness both gains and losses to that value. When you sell the stock,…
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I became a patient at the Inova Fairfax Hospital’s Advanced Lung Disease and Transplant Center in Virginia. Inova is one of 81 locations included in the Pulmonary Fibrosis Foundation’s Care Center Network (CCN). One…
Long before learning I had idiopathic pulmonary fibrosis (IPF), I supported the advocacy efforts of the National Ataxia Foundation (NAF). Like pulmonary fibrosis, some forms of ataxia are rare diseases. One of them, spinocerebellar ataxia type 3, also known as Machado-Joseph disease, took the lives of three…
In the 1939 Frank Capra film “Mr. Smith Goes to Washington,” a naive young man played by Jimmy Stewart is appointed to fill a vacant seat in the U.S. Senate. He was determined to make a difference and perhaps change the world. Faced with the challenges of the political arena,…
“It was July 9, 2021, at 9 a.m. NBC’s ‘Today’ show was on television in our house that morning. I was in my home office going through my morning routine while my wife, Susan, was downstairs in her home office. “When my cellphone rang, I recognized the number as the…
On Jan. 18, Larry Runyon passed away at 76. Larry was a warrior fighting idiopathic pulmonary fibrosis (IPF) for more than 15 years. He’s certainly not the first person I’ve known who has passed because of IPF, but he is the first one to pass whom I’ve known for…
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