I’ve been sick for most of this week with digestive issues. This is a chronic condition for me, but it always bothers me when it happens. I’m weak and unable to do much. I must gauge my energy levels and try to squeeze important tasks into the moments I…

My youngest son, Caeleb, is embarking on a new adventure and studying for his driver’s test. Once he earns his permit, we’ll take him to the church parking lot for practice. Caeleb is thrilled at the thought of driving to school and band rehearsals. He is growing up and realizing…

I recently accompanied my youngest son to his comprehensive checkup at the Ted R. Montoya Hemophilia Program and Treatment Center. Located in Albuquerque and affiliated with the University of New Mexico hospital system, the center serves as our main treatment facility for hemophilia. “MacDonald the Younger” started seeing the…

Two weekends ago, my husband, Jared, had a lengthy bleeding episode. It happened after a fun Father’s Day trip to the zoo with our baby girl, Cittie, and our nanny. We had a wonderful time filled with several firsts since pandemic lockdowns eased, including our first time out of the…

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

A few years ago, I took one notebook from my stationery collection and wrote on its first page: “My Official Book of Mistakes.” In this notebook, I was supposed to write the mistakes I made in business so that I would work hard on not repeating them while moving forward.

In past columns, I wrote about the benefits of creating a medical road map to keep everyone involved in my son’s hemophilia care on the same page. This collegial approach included data from medical, educational, and personal perspectives, allowing us to form a rich assessment of my stinky boy’s…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

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…

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…