My youngest son, Caeleb, is 16 and preparing to begin his junior year in high school. School has been difficult for him since before kindergarten. With complications from hemophilia and an inhibitor, he missed numerous days of school through his third-grade year, which caused him to…
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My daughter’s nanny left last week for a two-week vacation to her hometown. Since then, my husband, Jared, and I have been getting by without an extra pair of hands to help with chores and childcare. So far, it’s been a tiring, albeit interesting, journey. Ever since we became a…
One of my current goals in life is to become wealthy. I cannot deny that I need more personal finances than I currently have to sustain my family and live a balanced and fruitful life. As a carer to a husband with hemophilia and a seizure disorder while…
A single dose of Freeline Therapeutics’ experimental gene therapy FLT180a increased the levels of factor IX (FIX) — the missing clotting protein in hemophilia B — for up to around 3.5 years in nine out of 10 men with moderate-to-severe disease. That’s according to data from the Phase…
One of my favorite musicals is “Into the Woods,” with a book by James Lapine and music and lyrics by Stephen Sondheim. One of its roles that I wish I could perform is the Baker, but that’s for another time. In the show, the woods serve as a…
The first three participants in the B-LIEVE trial all have factor IX (FIX) levels within the normal range more than one month after being treated with FLT180a, Freeline’s experimental gene therapy for hemophilia B, according to the company. “The initial data show that FLT180a provides rapid and consistent…
When my oldest son, Julian, expressed an interest in the theater, with hopes of starting a career in musical theater, I smiled and felt I could be an excellent resource for him. After all, I had a reasonably successful career in the business, having done regional…
I consider myself a high-functioning adult. Living with depression, anxiety, and chronic pain brings quite a few challenges, yet I manage to keep moving. Add my son Caeleb’s bleeding disorder, and life can prove interesting. While managing our chronic conditions, I find that I rarely ask for…
As a pastor, I always remind my parishioners that it’s not enough to profess one’s faith. A person must live out the tenets of what they believe. In other words, talk is cheap. It doesn’t do a person any good to shout their love for God on Sunday and act…
Nearly one-third of people with hemophilia B have antibodies against a subtype of an adeno-associated virus (AAV) — called AAV6 — that is used as an experimental gene therapy carrier, a U.K. study found. Because such antibodies could render the treatment that the carrier holds ineffective, these patients would…