I discovered that I have a talent unlike any other. I’m a world champion at throwing pity parties. When times get tough and I feel lost, all I must do is put a cone-shaped hat on my head and recognize my misfortune. My glum permeates the air as I raise…
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Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…
“MacDonald the Older,” which I call my eldest son, successfully auditioned for the International Performing Arts Institute, a national musical theater symposium. He calls me nearly every night to share the great things he learned in different classes. My heart leaps up and down with joy when I hear his…
I was with my son in a store recently when a coloring book for adults caught my eye. Ordinarily, I wouldn’t have given it a second glance. But what made this one special was the title on its cover: “The Road Not Taken.” I couldn’t resist opening the book.
This year, my flower garden has grown exponentially. A wonderful gift that “bloomed” from my COVID-19 boredom was the chance to develop my horticultural skills. I increased my rose collection from six bushes to 14, and I added sunflowers, teddy bear sunflowers, zinnias, wildflowers, poppies,…
When I was in my early teens, a family member introduced me to the law of attraction. According to this “law,” thoughts determine the outcome of one’s life. Therefore, if your thoughts are positive, positive things will happen in your life. I was young and determined to try it…
The U.S. Centers for Disease Control and Prevention (CDC) is seeking input from people who live with pain, as well as their caregivers and healthcare providers to better understand values and preferences related to pain management. This information will help the CDC update and expand the…
At age 28, I received a diagnosis that changed the way I saw myself. Learning that I had attention-deficit/hyperactivity disorder (ADHD) felt like a missing puzzle piece finally clicking into place. Suddenly, everything that had once confused me about my life made sense: my struggles to stay engaged in tasks…
The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…
My older son, Julian, and I share many interests. We are both musicians and sing the same voice part, lyric tenor. Many people who hear us sing together tell me that it’s difficult to determine who’s singing. Our voices blend as if they’re one instrument. Genetics has a lot…