Are caregiving and parenting the same? Caregiving is the activity or profession of taking care of one who is sick or disabled. A parent is one who brings up and cares for another. As the mother of two sons with hemophilia, I believe that caregiving and parenting are not…

In the past few weeks, I haven’t been feeling as productive as I normally do in terms of work. In fact, as I type this, I’m sitting in front of my brand-new work desk in a sports top and ripped jeans — not my usual outfit when I’m…

My youngest son suffered his last joint bleed from hemophilia over seven years ago. Gone are the days when he could not walk, and a wheelchair was the most accessible way for him to get around at school and family outings. I work at a church that knows my…

As part of a Coalition for Hemophilia B contest, people with hemophilia B, their siblings, and caregivers are  invited to design a comic or coloring book that tells a story about how they manage this rare blood disease. There will be a $500 award for winners in each of…

GenScript ProBio and Neoletix Biotechnology have entered into an agreement for clinical and commercial production of a lab-made version of coagulation factor VIII, a product that the companies hope will make the preventive treatment for hemophilia A more accessible to patients in China. Coagulation factor VIII, or FVIII,…

Optimization of investigational hemophilia B gene therapy led to more than 25 times the production of factor IX (FIX), the blood-clotting protein that is missing in people with the condition, a study has found.  According to researchers, these findings support the…

This summer brings a tinge of melancholy as the Sangre de Oro Chapter of the National Hemophilia Foundation has announced that its usual weeklong summer camp will not meet in person. While I understand the reason for avoiding unnecessary health risks, I still feel sad for the regular…

The investigational gene therapy Roctavian continues to effectively and safely prevent bleeding episodes and the need for clotting factor VIII replacement therapy in adults with severe hemophilia A, five-year data from a Phase 1/2 study show. BioMarin Pharmaceutical, the therapy’s developer, plans to share the data in…

Recently, I preached a sermon that focused on advocacy. The basis of the message came from the Gospel of Mark 6:53-56. In the Scripture passage, people carried their friends and loved ones on mats to Jesus’ feet so that those who suffered from illnesses could touch his garment and…

My 15-year-old son, Caeleb, is looking for a summer job. We live in a small town, so his choices are limited, and many jobs require applicants to be at least 16. Part of me hopes he waits until next summer to find a job, but he is actively looking. The…