Stretcher-Bearers – a Column by Lori Dunham

Lori Dunham and her family have lived all over the world, thanks to the U.S. Navy. She and her husband have three children and currently live in North Florida. At age 14, their daughter was diagnosed with the rare disease Lambert-Eaton myasthenic syndrome. Lori’s mission in writing is to inspire and encourage those who find themselves in the role of caregiver to a loved one with a rare disease. When she is not writing or homeschooling her two youngest, Lori enjoys reading, baking, and spending time with family.

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 season begins Nov. 1 and gloriously continues through the end 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 U.S., where autumn meant driving down back roads lined with towering…

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 Pharmaceuticals sued the FDA and other parties over the agency’s…

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 new duty station with gusto. We often planted quickly and firmly…