My husband, Jared, and I are quiet, introverted people. We’re both averse to noisy crowds and overstimulating activities. Our idea of a good time is immersing ourselves in hobbies or getting away to a weekend nature retreat. Although my Myers-Briggs Type Indicator is ENFP, a personality classification that stands…

The last time my youngest son spent the night in a hospital due to a breakthrough bleeding episode was in February 2014. As years passed, his health continued to improve, and life returned to normal. The only difference between my son and the boy next door was the…

Before cellphones, memorizing phone numbers was a necessity. Racing home to make a phone call on the landline was how I made plans with friends and scheduled appointments. With smartphones, I can make a call with the touch of a button, no matter where I am. Although I no longer…

An investigational gene therapy for hemophilia B, called CB 2679d-GT, increased factor IX (FIX) levels and significantly reduced bleeding in a mouse model of the disease, a preclinical study demonstrated. The clotting activity of this potential therapy, being developed by…

In two months, my oldest son turns 25. After the initial shock that he is reaching a milestone birthday, I realized that next year proves crucial in terms of insurance. I currently cover him with my benefits package, but starting at 26, he must provide coverage for himself. He…

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…

My husband, Jared, and I run an online jewelry store. Over the years, the fact that our store is run by persons with disabilities (PWDs) has become one of its main selling points. We’ve had fellow PWDs and advocacy supporters speak to us and purchase items. They mentioned that…

As a caregiver, hope exists in practically my every waking thought. I wish for things to improve regarding my loved ones’ treatment. Hope keeps me going so that I may provide the best care possible for them. Four simple letters put together in the proper order set my heart and…

This time of year reminds me of hope and the promise of new beginnings. In the spring of 2014, when my son “MacDonald the Younger” was 8, his life drastically changed. Along with our talented hematologist, Dr. Winter, we mapped a treatment plan that proved successful for my young, stinky…

I recently celebrated my 27th birthday in the company of family. Despite being unable to go out due to government-mandated COVID-19 restrictions, I still had a wonderful celebration at home. Although it was a weekday, our workload that day wasn’t too heavy or stressful. I was able to do enjoyable…