Dear friends,
On April 21, 2025, I will be running the Boston Marathon to raise funds for research on PHACE and LUMBAR syndromes. This is a special collaborative effort with our beloved PHACE Syndrome Community and PeDRA (the Pediatric Dermatology Research Alliance). I tell the story behind my "why" below and the donation link is at the very bottom. Please share this with friends and family to support our cause!
Why this event and year?
This race marks a decade since my first Boston Marathon in 2015. It's still hard for me to believe I’m a marathoner, considering I was quite an unathletic, nerdy child who far preferred staying indoors reading books and had to be forced to go play outside!
That all changed in 1997 when I had just started my dermatology residency in Houston. One Saturday afternoon, while studying in my apartment, I heard a knock on my door. Through the peephole, I saw a young man about my age, holding a beer and wearing a bright green shirt with monkeys and pineapples on it. Deciding he looked harmless enough, I opened the door. He introduced himself as Adam, mentioned that he lived across from me (though I had never seen him before), and invited me to a party he was having. It turned out to be with a group of his fun and crazy running friends, and I learned that Adam himself was a marathon runner.
About a week after that, Adam knocked on my door again, this time asking if I wanted to go for a run with him. I immediately agreed (yep, he was that cute) and quickly put on my bright white Keds tennis shoes and my bravest smile. Five miles and several painful blisters later, I had done it! We got married a year later.
In the years to follow, we ran countless miles together and, after many more races, decided we wanted to run the Boston Marathon. Running this race is a lifetime goal for many runners because you need a qualifying time to enter, and it’s not easy to get. So we were over-the-moon excited when we both qualified to run Boston the same year, in April of 2015.
The day of the race was cold and rainy, but I loved it. Adam was a much faster runner than I was and had started the race much earlier, so I was surprised when I returned to our hotel room and realized he had just gotten back too. He told me he couldn't pinpoint it, but he just didn't feel right. Little did I know that would be the last race we would ever run together. Six weeks later, he was diagnosed with stage 4 esophageal cancer, and six months later, he was gone.
I am grateful for the many gifts Adam gave me, including our two incredible sons and the joy of running. Running has been my therapy, precious time with friends, and a way to honor him. Alex, Benjy, and I run the Houston half-marathon every year in his memory, and we've run to support cancer research many times. I've also been blessed to find love again with my husband Kevin, who is also a marathoner and will be running this Boston marathon with me for his first time.
Why this cause?
My journey to becoming a pediatric dermatologist, with a special interest in vascular birthmarks, began with a tiny newborn girl. I had the privilege of meeting her and her mom when they came for a dermatology appointment during my residency, which marked the beginning of a special relationship that continues to this day.
Realizing her diagnosis, which back then had only recently been described by Dr. Ilona Frieden as PHACE syndrome, and learning how to best help her changed the course of my entire career. Since then, alongside Dr. Frieden and many other wonderful colleagues, we have dedicated ourselves to promoting education and expanding knowledge about children with vascular birthmarks, particularly infantile hemangiomas.
The most serious, complex, life-changing hemangiomas occur in babies with large skin hemangiomas associated with underlying birth defects, known as PHACE and LUMBAR syndromes. Unfortunately, research on these syndromes has historically received limited support due to their rarity, and there is currently no known genetic cause or preventative therapy. As a result, many families face delayed diagnoses, a general lack of awareness, and, most critically, no effective treatment to prevent serious complications. Your support could help change that and bring hope to those affected by these conditions.
In celebration of the 10-year anniversary of my first Boston Marathon, I have thus chosen to advocate for this special cause. Your support will directly fund research for PHACE and LUMBAR syndromes through the Pediatric Dermatology Research Alliance (PeDRA), an outstanding organization composed of hundreds of innovative researchers who have dedicated their careers to improving the lives of children with skin disease. This effort is also in collaboration with the PHACE/LUMBAR Syndrome Community, the international patient advocacy organization that provides loving support for these children and their families. Both PeDRA and the PHACE Syndrome Community have generously agreed to provide matching funds for donations received through this fundraising effort.
Thank you from the bottom of my heart for taking the time to read my story. Your support means the world to me and to the many families affected by PHACE and LUMBAR.
With much love and gratitude,
Denise
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