My husband, Jared, and I have a great connection. In the nine years we’ve been together — five as a married couple — we’ve never run out of things to say. Every day brings a new topic to discuss. Conversation flows easily between us, even if it’s about a controversial…
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I recently came across an NBC News Think essay about the oft-overlooked privilege of being able to focus on one’s studies while in college. It reminded me of how my parents supported me through my own college years, and how I failed to fully appreciate how fortunate I was…
Every year at the First United Methodist Church of Belen, New Mexico, where I serve as pastor, I present a Bible to those graduating from high school and/or college. I select one of its verses that I feel connects with each specific recipient, and then I read the…
Whenever I scroll through my Instagram feed, I often reflect on the “what ifs” in my life. For example, what if my life had unfolded exactly as I had envisioned it during my youth? As a child, I was a dreamer with countless aspirations. I envisioned living in a different…
Genetic sequencing and the speed with which it can help diagnose a child’s disease — in addition to revealing the genes that cause at least half of the 7,000 rare diseases currently known — was the focus of a discussion by three top New York geneticists. The Feb. 28 conference, “Rare…
Pain can alter people’s behavior, causing them to act out in unusual ways. People experiencing a severe degree of pain may hurt others emotionally or physically, often without meaning to. They might say demeaning things to their caregivers while in the throes of pain, even if they’re normally calm,…
For at least 30 minutes nearly every day, while buzzing along on our YMCA’s treadmill or bike, I’m captive to the machine’s built-in cable and Wi-Fi. Though we’ve gone to “the Y” for many years, I’m still fascinated that I can watch just about any program I want, provided I…
It took one year for Dona Krystosek to get a diagnosis for her son, Levi, after he was born. The family received three misdiagnoses of fatal diseases until they found out Levi has Jansen’s metaphyseal chondrodysplasia — an extremely rare form of dwarfism.  “The hardest thing…
The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…
When I reflect on the unexpected detours my life took when my wife, Cazandra, and I had children, I cannot help but feel gratitude for them. They led me to where I am now. The author and teacher Joseph Campbell once wrote: “We must be willing to…