I am a woman who is extremely blessed. I have a roof over my head, food on the table, a little bit of money in my pocket, and two amazing sons. The best part is that I have an amazing husband to share these blessings with on this…

Last week, I set out in my car to donate some household items to Goodwill. I’ve been there probably a dozen times, but this time I drove past the Goodwill building twice. Why? Because my community is missing signs. All kinds of signs. Street signs, building signs, and even stop…

Dexamethasone, a steroid with immunosuppressive and anti-inflammatory properties, may temporarily increase the efficacy of one-time gene therapy when given at later time points, a study in mice suggests. Lab results showed that dexamethasone increased the levels of factor IX (FIX) — the missing clotting protein in hemophilia B —…

Last month, I had the privilege and the honor of being one of 60 attendees at the Mild Matters Summit in Tulsa, Oklahoma, organized by the Hemophilia Federation of America (HFA). The summit aimed to empower those with mild bleeding disorders by providing essential information and tools to…

As I entered my son’s bedroom this morning to turn on his light and wake him up, I heard him say a phrase that sent shivers down my spine. Caeleb, my boy, said, “Dad, my ankle hurts.” My first instinct wanted to allow him extra time to get himself together.

The other day, I found an old document from my husband Jared’s last hospital stay — the one after his freak accident on a pool slide. I’d written about it before, but seeing the discharge papers brought it all back. The memory feels a little funny to us now…

Lately, I’ve been reading a great deal of news about Hemgenix (etranacogene dezaparvovec), a one-time gene therapy approved by the U.S. Food and Drug Administration last November for adults with hemophilia B. Hemgenix, which also was approved by the European Commission in February, was found in…

I can’t complain too much about my quarantine life. In my home are my husband, Joe, and 14-year-old son, Caeleb. There’s also my 14-year-old spunky, one-eyed, geriatric Corgi mix, Betty. I don’t have to worry about homeschooling little children or entertaining anyone. This is a good thing. But…

I attended my first women-only hemophilia retreat in the fall of 2016. To say the weekend was an eye-opener would be a gross understatement. It changed my life. First of all, I learned that I was not alone in my struggles to understand lifelong bleeding…

I am a sucker for routine. Spontaneity does not come easily to me because I do not like surprises. I missed routine when my now 14-year-old son, Caeleb, was younger and hemophilia seemed to be the ever-present, unwanted guest in our lives. I joked that I missed boring…