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…
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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…
The holiday season brings happiness and joy to many. Homes are adorned with lights and decorations, and people wear clothing in festive colors. The excitement is contagious. However, many people find this time of year to be exhausting and even painful. When they are living with a rare or chronic…
With so much recent publicity surrounding gene therapy, it’s no surprise that the topic was a major focus of the recent 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit. From diagnosis and clinical trial design to manufacturing, pricing strategies, and ethical concerns, gene therapy — both its high…
My 10-month-old baby, Cittie, is becoming a daddy’s girl. She looks for her daddy when she wants to play. She clings to him when she wants to be carried. She gets uneasy whenever he leaves the room. Jared, my husband, can’t even stand up to go to the bathroom, lest…
Enzyre is teaming up with Takeda to develop a diagnostic device that will allow people with hemophilia to determine their blood coagulation status at home. Under the collaboration agreement, the Dutch diagnostics company Enzyre will receive funding from Takeda to optimize its Enzypad technology. The goal is…
Our Tiny Traveling Notebooks
We’re a family that has the good fortune of traveling often. It’s not always a grand journey — most trips are just a few miles from home. One constant during our travels is a set of tiny traveling notebooks — one in my purse and one in my husband’s pocket.
We Aren’t in Kansas Anymore
My wife is scheduled for surgery this week in Albuquerque, New Mexico. She will be in the hospital for one or two nights. We live about 3½ hours from the hospital, so we will be gone for about three days. We are optimistic that her recovery will go well…