Finding the Rare Blessings Among the Hard Days
“All we have to decide is what to do with the time that is given us.” — J.R.R. Tolkien The most wonderful time of the year is almost upon us. In my eyes, the Christmas…
Stretcher-Bearers — Lori Dunham
Lori Dunham and her family have lived all over the world thanks to the U.S. Navy. She has a degree in human resources but enjoys writing to encourage and inspire others. When her daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome at age 15, Lori sought community and encouragement from those walking a similar path. Lori’s mission in writing is to inspire and encourage those who find themselves in the role of caregiver. When she is not writing or homeschooling her two youngest, Lori enjoys reading, baking, and spending time with family. Currently they live in Jacksonville, Florida.
Featured Post
A friend’s journey with Lambert-Eaton myasthenic syndrome
None of us want to become a part of a statistic like the number of people with Lambert-Eaton myasthenic syndrome (LEMS). Odds are that most of us won’t, considering that there are only an estimated 400 known…
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Weighing the Pros and Cons of Taking Another Immunosuppressant
We live only two hours from “The Happiest Place on Earth,” so it’s no surprise that we used to frequent Disney World. Each year, my children would push me to ride bigger and scarier rides. I’m more of…
Seasonal Changes Remind Me to Take Care of Myself
“I’m so glad I live in a world where there are Octobers.” — L. M. Montgomery, “Anne of Green Gables” October has always been one of my favorite months. I grew up in the beautiful Northeast of the…
A Service Dog for When Mom’s Not Around Every Day
My daughter, Grace, is an animal lover, always wanting to rescue the homeless or sheltered dog, the stray cat, or the random gerbil that needs a new home. So it was no surprise to me when she…
The Value of Supportive and Encouraging Relationships in Life With LEMS
It’s funny to think how life’s little moments can suddenly become momentous. Rarely do I start a day thinking it will be spectacular. However, when we intentionally look for the good flowing through our days, we can’t help but…
How Will an Appeals Court Ruling on Ruzurgi Affect My Daughter?
Most of us in the Lambert-Eaton myasthenic syndrome (LEMS) community have been following a court case involving Ruzurgi (amifampridine), the only LEMS treatment approved by the U.S. Food and Drug Administration for children under 17. In 2019, Catalyst…
Finding Ways to Embrace Inevitable Change
“There are far, far better things ahead than anything we leave behind.” – C. S. Lewis As the wife of an active-duty military member for 23 years, I have known my share of change. Usually, our family embraced a…
Cultivating an Identity Beyond Chronic Illness
When my son was in high school, he had an individual education plan for math. This plan accommodated his need for extra help and time in a subject that didn’t make sense to him. Otherwise, he was a very…
How to Advocate for Yourself or a Loved One With LEMS
Raising a child with a rare disease like Lambert-Eaton myasthenic syndrome (LEMS) has its challenges. One area that was challenging for me was knowing when to push beyond the bounds of normal advocacy for something I knew my…
The Importance of Connecting With the LEMS Community
I felt very alone when our daughter, Grace, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). I had no idea where to turn for help. Our family didn’t know anyone with LEMS, or any other rare disease. Her doctor had…
The Tricks That Made Air Travel Easier for My Daughter
Most lives have been interrupted by the events of the past two years. People across the globe have had to cancel plans, miss family reunions and weddings, curb travel, and limit contact with others. Our family has been no…
A Day in the Life: Grace Receives a Rituxan Infusion
Every six months, my 16-year-old daughter, Grace, receives a dose of Rituxan (rituximab), the latest and greatest treatment we have added to her regimen for Lambert-Eaton myasthenic syndrome (LEMS). Before that first dose, Grace was exhausted all the…