Note: This story was updated Nov. 6, 2020, to clarify key scientific concepts. The gene-editing tool CRISPR/Cas9 enables a targeted gene insertion approach that may be superior to conventional gene therapy at restoring the activity of factor IX (FIX), the blood-clotting protein missing in people with…

The current state of our world has me longing for something. It’s something that when gone, nothing remains quite the same. What I long for is routine. Yes, I miss the humdrum and the mundaneness of routine. I can still count on some aspects of my life remaining steady, such…

Earlier today, as I was browsing one of the Facebook mom groups I belong to, I came across another mother’s heartbreaking post. Her daughter, a toddler like my own girl, had been battling cancer for some time. All I could think was that she was too little to have to…

An upcoming episode of the TV series “Advancements,” hosted by Ted Danson, will be dedicated to current and future research and therapeutics for inheritable bleeding disorders. The new episode will feature work developed by the National Hemophilia Foundation (NHF) and explore the non-profit’s programs in bleeding diseases, such…

When our youngest son, whom we affectionately call “MacDonald the Younger,” was diagnosed with hemophilia, my wife and I didn’t know how to respond. We were in a state of shock and hadn’t thought something like this was possible. Later, we learned that my wife was a hemophilia carrier,…

Quarters. I ended up with a fistful of quarters the other day and had flashbacks to the early days of hemophilia. When my firstborn son came into the world, we lived in Houston. In the early days of Julian’s hemophilia diagnosis, trips to the Texas Medical Center were…

When my husband, Jared, and I first started our online jewelry store, we knew our business was not going to be like other enterprises in the market. He lives with hemophilia and epilepsy, while I am diagnosed with anxiety and depression. We feared that bleeds, seizures, and mental breakdowns would…

Reports of translucent particles of being detected in Hemlibra (emicizumab) in 2019 do not pose a safety risk or affect the therapy’s effectiveness and, according to Roche, health authorities have agreed that the treatment’s benefit/risk profile remains unchanged. Yet, the company is proposing the use of a…

Lately, I’ve been finding myself in need of more “alone time.” Now that I am a mom to a hyperactive and curious toddler, most of my days are spent listening to nursery rhymes on repeat, chasing our baby girl and making sure she doesn’t hurt herself while exploring her surroundings,…

My family loves dogs. My wife and I have never known married life without a beloved pet. They continue to bring us joy, while at the same time imparting valuable life lessons. Our pets teach us to care for something more than ourselves. Our puppies need us as much as…