Once a month, Anovo pharmacy calls to refill my daughter Grace’s prescription of Firdapse (amifampridine). The conversation doesn’t vary from month to month. First, they’ll inform me the call is being recorded. Next, they’ll confirm some personal information. Finally, they’ll ask if Grace has missed a dose since…
Stretcher-Bearers – a Column by Lori Dunham
At the start of each new year, I do the same dance as many of you. I examine the year we’ve just left behind and intentionally pursue change in certain areas of my life. Exercise more. Eat healthier. Learn a new hobby. Some of these resolutions stick. Others are long…
Some memories are so special that you know they’ll be held close to your heart for all time. For me, one of those memories was when we heard our daughter Grace laugh for the first time. It happened the day after we met her in a government office in…
“Life was like a box of chocolates. You never know what you’re gonna get.” — Forrest Gump, in the film of the same name Most would agree that life can be unpredictable. Our family certainly didn’t expect that our daughter Grace would face the onset and diagnosis…
When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, I thought our lives would never be the same again. Her life, and ours, seemed to come to a screeching halt. LEMS interrupted and restructured our daughter’s active life. Everything changed to accommodate her…
For most of my life, I’ve been an open book. I tend to trust people quickly and make fast friends. That’s partly out of necessity, as I’ve been a military wife for most of my adulthood and military families tend to settle in quickly. In my case, that tendency also…
My childhood memories hold a lot of special moments: our first family trip to Disney World, summers at the Jersey Shore, fun family celebrations. But mostly, I remember the mundane parts of family life. In those moments, we learned valuable life skills. Some of my earliest memories are of my…
As far back as I can remember, I wanted to be a mom. Sure, I had other interests, hobbies, and ambitions, but my deepest and most meaningful dreams were about motherhood. I not only loved mothering, but I was often called upon to parent solo when my husband was deployed…
Most of us have vivid memories of a day that changed the trajectory of our lives — that point on the calendar separating the before from the after. Some of those days hold the best of memories, such as a wedding or the birth of a child. Others hold darker…
I have a friend who lost her 16-year-old son this summer in a swimming accident. I’m heartbroken for her family. My own family grieves their loss, and my 16-year-old daughter misses him terribly. Yet I occasionally catch myself saying something to her that may appear insensitive. I once asked…
Recent Posts
- Rare cases of LEMS in pregnancy show need for personalized care November 19, 2025
- Thanks to her LEMS treatment, my daughter is thriving November 17, 2025
- LEMS and autoimmune enteropathy co-occur in rare disorder case October 22, 2025
- Deal reached in US legal dispute over approved Firdapse generic September 16, 2025
- Updated guidelines urge LEMS testing for lung cancer patients August 19, 2025
- Firdapse boosts muscle strength in Japanese adults with LEMS: Study July 15, 2025
- Man’s reflex abnormality leads to diagnosis, treatment of LEMS June 17, 2025
- LEMS diagnosed in woman with other autoimmune conditions May 20, 2025
- Rare case of LEMS associated with cancer of the esophagus reported April 15, 2025
- The need to make connections in the LEMS community April 7, 2025