Earlier this week, I stopped the car and let my youngest son, Caeleb, out for his first day as a junior in high school. I looked at him and told him that I loved him and that this year could be the start of something extraordinary. His laugh let me…

The National Heart, Lung and Blood Institute (NHLBI) is hosting a State of the Science Workshop on May 15-16, 2018, in Bethesda, Maryland, to include input from the hemophilia community into a coordinated strategy for future basic, translational, and clinical research. Although preregistration is closed, on-site registration…

It was a beautiful Sunday afternoon and I encouraged my son Caeleb to take our dog, Betty, for a walk. He gathered the necessities of a 14-year-old — headphones and music — and put Betty on her leash and off they went. Encouraging my son to be active is difficult.

For some patients with moderate or severe hemophilia, switching from standard to extended half-life replacement therapy results in improvements in key outcome measures, a study in Canada found. Most of these self-reported gains in health-related quality of life, and physical, mental, and social functioning three months after the switch,…

I’ve been struggling with my mental health lately. For the past two years, I’ve been juggling two or three freelance jobs at a time while also fulfilling my roles as a mom, wife, and carer to my husband, Jared, who has severe hemophilia B and a seizure…

Last Friday, I had the honor of presiding over the funeral of my aunt Joyce. As I started to speak, I asked those attending to remember a particular date in 1973 when we, the family, celebrated the wedding of my uncle Pat. Everyone was dancing, and joy just filled…

I love a good laugh. When things are terrible and the world seems to be imploding, a well-timed joke or story can completely change the direction of the day. I am grateful to live in a home that is filled with love and laughter. I can count on…

When my youngest son, Caeleb, was born over 19 years ago, my wife and I found out that he had hemophilia before leaving the hospital. Devastated, we could not begin to tell anyone how we felt about the diagnosis. I remembered our struggles raising my oldest son, Julian, now…

There’s a saying that’s been on my mind a lot lately: “Action is the antidote to anxiety.” It resonates deeply, especially in our household, where uncertainty is part of daily life. My husband, Jared, has severe hemophilia B and epilepsy — two conditions that bring unique challenges. Together, they…