Hope in Action
— Kristen Wheeden

A friend recently sent me a grainy image taken 10 years ago at Camp Sundown, a camp for children with rare diseases that make sunlight dangerous and painful. In the photo, my friend and I are sitting on top of a car with a few other moms. Back then, we…

Lately, there has been more attention directed my way than I am entirely comfortable with. Recently, it came after my team shared behind-the-scenes photos from filming a segment for the morning television show “The Balancing Act” in the office of the United Porphyrias Association (UPA), where I serve…

My work is both personal and professional for me. That is one of the beautiful and complicated gifts of rare disease advocacy. I do this work as the president of the United Porphyrias Association (UPA). I also do it as Brady’s mom. And that little boy, my “baby,” who…

I love my job! It is hard to adequately express how blessed I feel to be part of the porphyria community, to lead the United Porphyrias Association, and to advocate on behalf of patients and caregivers. I get to connect with expert physicians, support patients, curate meaningful…

A few weeks ago, our porphyria community received bad news. The U.S. Food and Drug Administration (FDA) issued a complete response letter to Disc Medicine’s new drug application for bitopertin, an experimental oral therapy designed to treat erythropoietic protoporphyria (EPP) or X-linked protoporphyria. This means the FDA rejected…

One of my greatest heroes and mentors has always been my dad. Sadly, we are coming up on the first anniversary of his death, and I keep catching myself talking to him in my head. He was amazing, not in a loud way, but in a beautiful, quiet way. I…

Nearly 17 years ago, when my son Brady was diagnosed with erythropoietic protoporphyria (EPP), I fell to the floor in a puddle of fear. How would my little boy avoid the sun for the rest of his life? There were no easy answers, and there certainly were no easy…

When my son Brady was diagnosed with erythropoietic protoporphyria in 2009, I had no idea that my extended family would grow to include so many people affected by all types of porphyria. Over the years, I’ve learned more than I ever imagined about these diseases, as well as the…

Sometimes in patient advocacy, a great event means planning everything down to the minute: logistics, panel preparations, seating charts, and more. At other times, I find myself backstage with seven teenagers and wonder, “What was I thinking?” Last month, something truly special happened in Boston. A group of extraordinary young…

The United Porphyrias Association (UPA), where I serve as president, recently asked our community to do something more raw and vulnerable than ever before. For Global Porphyria Day on May 18, we asked: “What does porphyria pain feel like?” And you answered. Goodness, did you answer. It wrenched…

Sometimes hope feels heavy. In the past several months, the porphyria community lost several beautiful souls. They were different in age, type of porphyria, and geography, but all were taken too soon. As I sit at my desk at the United Porphyrias Association office (where I serve…