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Thoughts on How to Build Our Communities With Intention

I’m a student of living life with intention. That means living with the end goals in mind. Whether they’re career goals, financial goals, or relationship and parenting goals, knowing the desired outcome helps walk you toward that goal. Some of the best parenting advice I received as a young mom…

Steps I Took to Bring Joys Back Into Our Home

Living with a chronic illness, or caring for a loved one with a chronic illness, can often be overwhelming. When our 17-year-old daughter, Grace, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14, everything else in life was seemingly pushed aside. Instead of having a multidimensional life, we…

We’re Taking Back All That We Lost to LEMS

When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), she was just 14 years old. At that age, kids are just beginning to flesh out their interests and desires for the future. Grace was no different. She was beginning to learn not only what she was good…

Weighing the Pros and Cons of Mestinon to Treat LEMS Symptoms

A rare disease diagnosis comes with many challenges. One significant challenge is the statistic that, according to some estimates, 90% of rare diseases don’t have a treatment approved by the U.S. Food and Drug Administration. Thankfully, the Lambert-Eaton myasthenic syndrome (LEMS) community is blessed to have…

Knowing When and How Much to Share About LEMS

When our 17-year-old daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at the age of 14, we struggled to know how much to share about her health, and with whom. In some instances, such as at school or church, it was imperative that we discuss her condition so…

The Heroes Living Among Us

I have been surrounded by heroes much of my life. For the past 23 years, I traveled the world alongside my husband as he served in the U.S. Navy. I have been on flag-draped streets welcoming shiploads of sailors back to American shores. My 5-year-old son and I have held…

With LEMS, Activities Require a Cost-benefit Analysis

Like many others, our family is returning to a normal routine after enjoying an increase in activities, family events, and time with friends for the Easter holiday. I love the extra family time and the break from work. We do fun day trips we don’t normally have time to do.