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…

Directly switching from Hemlibra (emicizumab) to Novo Nordisk‘s investigational Mim8 (denecimig) was well tolerated in adults and adolescents with hemophilia A, regardless of whether they had inhibitors or not. That’s according to results from the now-completed Phase 3b FRONTIER5 study (NCT05878938), which assessed the safety of switching…

I have a version of Pandora’s box. Fortunately, the box doesn’t see the light of day. I keep it on the top shelf of my closet, hidden behind extra pillows that are stored away for months on end. The box contains years of pain, grief, sorrow, and buckets of tears.

Recently, I’ve been reading a lot of online content about hemophilia on forums dedicated to the disease and in articles. It could be because my Google Alerts and scholar searches are sending me plentiful links to browse. I’m noticing some consistent themes online: Moms are desperate for solutions;…

I have been applying to graduate programs that would incorporate more spirituality into my advocacy work with the hemophilia community and allow me to explore how faith and spirituality help people cope with bleeding disorders. Among them was a dream doctoral program for working professionals that offered students scholarships…

BioMarin Pharmaceutical has resubmitted a regulatory application seeking approval in Europe for its experimental gene therapy Roctavian (valoctocogene roxaparvovec) for severe hemophilia A. That resubmission, to the European Medicines Agency (EMA), included one-year follow-up data from BioMarin on the therapy’s safety and effectiveness in treating the rare genetic…

As a former band director, I understand the importance of each musical instrument in an ensemble. The percussion keeps the rhythm steady. The low brass offers the foundation of the music, and the trumpets, flutes, and clarinets play the melodies. Each section contributes to the overall piece. Music is an…

A foam roller to release tension in the fascia — a casing of fibrous tissue that surrounds and holds other tissues in place — is safe to be used by patients with knee joint disease caused by hemophilia, a Spanish has study found. When the fascia tightens around muscles,…

When you have a year that is best left in the past, ushering in the new year is a time of celebration. You start with a clean slate and an attitude of hopefulness for what is yet to come. For many years I based the quality of a…

In our culture, we learn at a very young age to make resolutions at the start of a new year. Unfortunately, the odds of breaking our goals are much higher than the odds of fulfilling what we set out to accomplish. UAB Medicine News reports that less than 8% of…