Recent Posts

Chloe’s Fight Rare Disease Foundation Video [NEW]

Watch our new video & learn more about Chloe and the mission of the Chloe’s Fight Rare Disease Foundation. Share this video with your family, friends, and coworkers to help us raise awareness of children rare diseases in Minnesota. Produced by Josette Elieff. >>> More

Rare Action Network in MN

The Rare Action Network℠ (RAN) is the nation’s leading advocacy network working to improve the lives of the 30 million Americans living with a rare disease at the state level. RAN serves as a broad spectrum of stakeholders ranging from patients, to their families, caregivers, and friends; from researchers to industry; to physicians and academia. While working predominantly at the state level, the network will filter information up to NORD’s national federal policy team to help address issues of national concern. >>> More

Post-Race Thank You

Thank you to the hundreds of people who attended and supported the 2017 Chloe’s Fight 5K Toga Run/Walk in partnership with the Minneapolis Greek Festival. Save the Date for 2018! >>> More

What Do Treatment Options for Children with Rare Diseases Depend On? (Written by Erica Barnes, Published in USA Today)

Imagine you are a prize fighter facing the toughest opponent of your life. You step into the ring only to realize you have no boxing gloves and no corner man to coach you through the fight. You have the heart but not the necessary tools.

Now imagine your opponent is a terminal illness and what you are missing is a cure and doctors able to offer you viable treatment options. This is the harsh reality for millions of American children who have been diagnosed with a rare disease. >>> More


Older Posts

Medicaid Is A Lifeline For Children With Rare Diseases – by Erica Barnes

As America’s lawmakers debate various ways to fix our broken health care system, we in the rare disease community are alarmed by proposed cuts to Medicaid funding. The term “rare disease” is a bit paradoxical. When viewed individually, a particular disease may affect a minuscule portion of the population. But when considered as a whole, roughly 1 in 10 Americans live with a rare disorder. >>> More

February 29th is Rare Disease Day: 4 Reasons You Should Care – by Erica Barnes

Before my daughter passed away from a rare disease I had never heard of “Rare Disease Day” and knew next to nothing about the impact rare disorders have on society. Over the past few years I have learned that rare diseases play a larger role in public health than most people realize and deserve consideration from the medical community, policy makers, and the general public.

A rare disease is defined by the National Institute of Health (NIH) as any disease that affects less than 200,000 people at a given time. The last day in February is an internationally recognized day set aside to raise awareness of the impact that rare diseases have on society. Here is what you need to know. >>> More

The Zero Sum Happiness Game (Or, What I Want My Daughter to Know About Being Human) – by Erica Barnes

America is a happiness-obsessed society. This observation has been made so many times that it is almost a platitude to say it. Oh, I’m not claiming that we are actually happy people. In fact, most surveys indicate that we Americans are less happy than people in many other cultures. I will leave the explanations for this to people far more astute than I am. But suffice it to say that happiness is a value so enshrined in the American psyche that it even made it into our Constitution. “Life, liberty, the pursuit of happiness…”

Don’t get me wrong. I’m not arguing that the desire to be happy is bad or even unrealistic. But there does seem to be an underlying assumption in popular culture that the ideal to strive for in this life is one hundred percent happiness. One hundred percent of the time. The fact that we must know that this is not rationally possible doesn’t seem to change the fact that we try to be. And we just don’t do very well as a culture accommodating other-than-happy in our everyday lives. We avoid anything that might make us the least bit sad or uncomfortable. And we really wish that other people would avoid sad and uncomfortable topics when they chat with us. So when the lady that always mentions the funny things her dead daughter used to do starts talking about said daughter at a dinner party we smile politely but quickly change the topic. Because what she is talking about is, well, sad. >>> More

Finding a Name – by Erica Barnes

Mother’s Day came and went and with it the familiar struggle to find a label for myself. I like definitions for things. Labels are comforting and secure. Call it a personality trait, but I often feel if I could just find a word that describes the person I’ve become since losing my daughter I would somehow be able to own that title and act the way a whatever-the-word-is acts. I once heard a person say that we can find titles for all kinds of loss. A woman who loses her husband is a widow. A man who loses his wife is a widower. A child who loses his or her parents is an orphan. But, so the argument went, the loss of a child is so deep and painful that humanity hasn’t been able to find a word for it. Maybe that’s true. The thought resonated with me when I first heard it. But in the years since losing Chloe, I have come to a different conclusion for why we haven’t found a special title for a person who loses a child. >>> More


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