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Note: This column describes the author’s own experiences with medical marijuana products. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Living in Colorado is a dream for many reasons, including the fact that there are over 300…
Living in a big city like Denver has always had its perks. My office downtown is but a 10-minute drive from home, our food scene is incredible, and the city is diverse and always growing. And one of the biggest blessings of living in Denver is having good access…
Summer for most teens is a time to relax, stay up and wake up late, enjoy time with friends, and be free from the demands and stress of high school. For my 15-year-old daughter, Bella, though, summer has been a time to catch up on schoolwork so she’ll pass ninth…
The past few years have been challenging for me, my family, and especially my youngest daughter, Bella, who in 2017 was diagnosed at 9 years old with neuromyelitis optica spectrum disorder (NMOSD). At the time, the best course of therapy recommended by Bella’s neurologist was Rituxan…
A 15th birthday is a special event for a teenager. Whether you have a big celebration with lots of friends and family, or a small gathering with loved ones and furry friends, having the opportunity to celebrate another trip around the sun is memorable and fun. In my Mexican culture,…
The human body is a fascinating and mysterious thing both to understand and to listen to. Personally, I think hiccups are one of the most annoying things our bodies do. They seem to come at the worst time and last longer than we’d prefer. Growing up, my siblings and…
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…
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