In Chinese philosophy, the concepts of yin and yang represent two opposing forces that come together in synergy to complement each other and create a perfect balance. Their symbols are interconnected black and white halves of a circle, each with a dot of the opposite half’s color. It perfectly…

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…

Driving home from choir practice, I noticed that my pinky felt strange. It was really stiff, and I couldn’t bend it. When I rubbed the outside of my knuckle, it hurt a lot. By the time I arrived home, it was swelling and turning black and blue. I had no…

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…

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,…

Our baby, Cittie, is now the textbook specimen of a toddler. My husband, Jared, often finds himself surprised by how quickly she is developing. Her vocabulary doubles by the day, and she is even learning interjections. As funny as it is to hear her suddenly screaming “Oh no!” or a…

Dear (young) person with disability, I hear you. You’re having a tough time with money. Maybe you’re having difficulty finding a job. You probably have the qualifications — you may have gone to college and had internships here or there — but no company will accept you. You blame it…

This week marks the launch of the “7,000 Mile Rare Movement,” a nationwide effort to raise money for research into the 7,000 known rare diseases that afflict at least 30 million Americans. The campaign kicks off Feb. 1 and culminates with Rare Disease Day on Feb. 28. Organized by…

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

Mistakes can be costly. The damage of a single mistake can cost a few dollars or an entire livelihood. In an ideal world, we’d learn our lessons before we had the chance to make any mistakes. That way, we could avoid ever making them. It’s like going to school,…