My husband, Jared, and I run an online jewelry store. Over the years, the fact that our store is run by persons with disabilities (PWDs) has become one of its main selling points. We’ve had fellow PWDs and advocacy supporters speak to us and purchase items. They mentioned that…

In winter, when the trees no longer hold their leaves, and the cold and shorter days can make us feel like something has been lost, we can find in the peculiar evergreens a contrast to all those feelings of hopelessness. There is life still growing amid all that lifeless darkness,…

Last week, I attended a clergy retreat at Sacramento Camp & Conference Center, in the southern mountains of New Mexico. We experienced clear blue skies and mild temperatures, as well as moments of self-reflection. One day I hiked to the top of a mountain, standing in awe of…

We’re a family that has the good fortune of traveling often. It’s not always a grand journey — most trips are just a few miles from home. One constant during our travels is a set of tiny traveling notebooks — one in my purse and one in my husband’s pocket.

My oldest son, Julian, possesses many talents. Last August, he moved back home to save some money. He continues auditioning for theaters, hoping to make a living as a professional entertainer. I’m a little biased (OK, a lot), but his voice is in tip-top condition, and he can adequately compete…

The U.S. Food and Drug Administration(FDA) is updating its 2015 draft guidelines for drug discovery in rare diseases, with new guidance on natural history — how disorders such as spinal muscle atrophy (SMA) run their course if untreated — the choice of “efficacy endpoints” in clinical trials,…

When my oldest son, Julian, moved back home, he knew that I, in my Methodist minister role, needed a couple of singers to help lead a 9 a.m. worship gathering. I debated whether to ask him if he could help me out, but before I could utter a word, he…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

Oct. 7, 2019, came and went like any other day. Our family went about our business: my son went to school, and I sat at my desk, planning my next sermon. But the day was special. It was the birthday of my wife, Cazandra, and it might have gone unnoticed…

I will never forget the evening in the mid-80s when my parents sat my brother, my sister, and me down for a critical conversation. They told us that my father had HIV. There was a very good chance he would die before my sister graduated from…