My family entered the hemophilia community more than 23 years ago with the birth of my oldest son. During our time with the bleeding disorders community, my wife and I learned to access ports, treat and perform peripheral sticks, and negotiate difficult circumstances. We did not receive a manual titled…
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I have begun the year on a high note: I can park both cars in my garage. My family pitched in to help with a clear out. We tossed things we no longer need and donated useful items. It was a fantastic feeling to get rid of the things that…
As early as September, colorful Christmas lights adorn all sorts of spaces in the Philippines. Families begin decorating their homes and stores start to roll out out holiday promotions: holiday-themed drinks, planners for collecting stickers — you name it. At the onset of such traditions, one can feel the so-called…
Sangamo Therapeutics has handed over the development of SB-525, a gene therapy for hemophilia A, to Pfizer, which will now advance the therapy into Phase 3 clinical trials. Pfizer has already started recruiting participants for the lead-in Phase 3 trial (NCT03587116). which will support…
Moving from Darkness into Light
This month has brought a holiday rush of hemophilia news on potential new treatments, studies, and acquisitions — all of which serve to raise hope during this solstice season, as we move past the shortest day of the year. Solstice can be a…
Takeda Presents Real-World Data on Cost-Effectiveness and Long-term Benefits of Adynovate and Feiba
Takeda has presented new real-world data to support the cost-effectiveness and persistent benefits to patients of its hemophilia A and B therapies: Adynovate [antihemophilic factor (recombinant), PEGylated] and Feiba (anti-inhibitor coagulant complex). The findings were discussed at the recent 61st American Society of Hematology…
As the year draws to a close, I cannot help but review the successes and failures of the past 12 months. How do I continue to honor the many roles that I play as a husband, father, caregiver, and pastor? Where is there room for improvement? How can I improve…
Looking Ahead to the New Year
As I look back on where I was at this time last year, I can honestly say that 2019 has been a fantastic year. My health has improved tremendously. My book, “Dear Hemophilia, Finding Hope Through Chronic Illness,” has been published. And most importantly, my sons with hemophilia have…
I am scrambling to find my way back to a schedule that includes time to write and research. For some reason, I am finding it difficult to get motivated. I set out to finish my doctorate in ministry from Austin Presbyterian Theological Seminary, and now I have it. What’s…
With Christmas only a few weeks away, Hemophilia Association of the Philippines for Love and Service (HAPLOS) threw its annual Christmas party. It’s a modest event, but seeing people gather, spread cheer, and enjoy one another’s company is heartwarming. The party is also a time to express gratitude to…