Courage to Care — Candice Galvan

Since 2008, the global rare disease community has observed Rare Disease Day every year on the last day of February. Currently, there are more than 7,000 known rare diseases affecting up to 30 million, or 1 in 10, Americans. In 2017, my youngest daughter, Bella, was diagnosed…

Most people can agree that life is one big roller coaster of highs, lows, twists, and turns. This is especially true for anyone living with or caring for a loved one with neuromyelitis optica (NMO). When my daughter Bella was diagnosed with NMO in 2017, our world…

Hello, 2023! A new year brings new opportunities for growth, learning, advocacy, support, and research in the neuromyelitis optica (NMO) community. I am happy to share a few of the exciting things happening in the first few months of the year. Feb. 28 (or Feb. 29 during leap…

Thankful, grateful, blessed. These three words are part of a table decoration my husband recently bought me and placed on my desk as a reminder of the incredible life we are living. No matter the time or day, these three words give me hope and inspire positive thoughts and feelings.

The human body is fascinating for many reasons. Our body speaks to us throughout the day, letting us know when we are hungry, tired, full of energy, sick, or in pain. It’s a temple we must nourish, listen to, and treat well. Sometimes our body screams at us to…

Being diagnosed with a rare illness such as neuromyelitis optica (NMO) can be devastating, affecting everything from day-to-day life to relationships, work, and finances. When my youngest daughter, Bella, was diagnosed with NMO in 2017 at the age of 9, she spent six weeks in the hospital, and…

Advocacy is the action of advocating, pleading for, or supporting a cause or proposal. I’m a firm believer that we’ve all been an advocate or benefited from advocacy at least once in our lives. Personally, I’ve been able to experience the blessing of both having an advocate and working to…

In the weeks after my youngest daughter, Bella, was diagnosed with neuromyelitis optica (NMO) in 2017, work and finances weighed heavily on my mind. I’d started a new job a month before Bella got sick, so I didn’t have any paid time off and didn’t qualify for the Family…

Five years ago, Aug. 28, 2017, began like any other day. I had taken the day off work to run errands, and I got up early to help my youngest daughter, Bella, get ready for school. She had just started fourth grade at a new school and had a long…

One of the most important jobs new parents have is to protect their children from pain. I am a mother of three, and every time one of my kids gets hurt, I want to take on the pain myself. When my youngest daughter, Bella, was hospitalized with neuromyelitis…

In the five years since my daughter Bella, 14, was diagnosed with neuromyelitis optica (NMO), I have just barely come to accept that we may never know how or why she developed the disease. As Bella’s mom, I’ve spent countless sleepless nights filled with guilt and worry that something…

August 2017 was a busy and exciting time for our family. My youngest daughter, Bella, and I had just spent the weekend helping my oldest daughter move into her dorm room and begin her freshman year of college; my son had just begun his freshman year of high school; Bella…