Stretcher-Bearers — Lori Dunham

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…

“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…

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…

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…

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…

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…

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…

Some days are just harder than others. Wouldn’t you agree? Much of the time, I feel like we are moving along nicely on this rare disease journey. We are in a good rhythm with the treatment plan for our…

At this time last week, I found myself back in the place where our journey with Lambert-Eaton myasthenic syndrome (LEMS) began. We were living in Connecticut when our daughter Grace began experiencing unexplainable symptoms, including random falls, walking with…

One of the first accommodations we made after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) was acquiring a disabled person parking permit. One of the prominent symptoms of LEMS is muscle weakness, which can make…

Summer can present a host of problems for those living with Lambert-Eaton myasthenic syndrome (LEMS). Heat and humidity are known to exacerbate muscle weakness. Our family lives in Florida, which presents many challenges for our daughter Grace, who is…

I consider watching our daughter struggle through the symptoms of Lambert-Eaton myasthenic syndrome (LEMS) one of the most difficult aspects of my life. As I look back on the last two and a half years since Grace began showing…