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A few weeks ago, the EveryLife Foundation for Rare Diseases hosted its 12th annual Rare Disease Week on Capitol Hill. This year, 600 advocates, including me, gathered in Washington, D.C., to learn about public policy, share our stories with legislators, and advocate for our communities. I never dreamed…
Neuromyelitis optica (NMO) is the illness that robbed my youngest daughter, Bella, of her innocence and a big part of her childhood. It’s the illness that appeared to us overnight in 2017, changing our lives forever. It’s what I was instructed to Google when Bella was diagnosed. NMO…
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…
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