I have come to appreciate the act of learning late in life. Until recently, I had taken for granted the ability to go to school, learn, and be educated in the field of my choosing. It was something I was expected to do, so I did it, mostly with little…

It seems that Lambert-Eaton myasthenic syndrome (LEMS) likes to keep us guessing. Two years after our daughter Grace’s diagnosis, we are still learning how the disease affects her.  On many days, we feel that Grace has settled into a manageable routine. We see improvement in her…

For the first year after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), our schedule was filled with doctors’ appointments. Referrals to neurologists, rheumatologists, dietitians, and physical therapists abounded. Add in monthly IVIG treatments, and it felt like we lived at the hospital.

Receiving a diagnosis of Lambert-Eaton myasthenic syndrome can be overwhelming. For many, the journey likely entailed multiple visits to doctors and many years of waiting. When we received our daughter Grace’s diagnosis, we learned there is no cure, but we were encouraged upon discovering that numerous treatments are available…

The first question I asked after my daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) was what types of treatments were available to her. I do not take it for granted that treatment is available, because I know many other rare diseases do not afford the…

This has been a year of firsts for Lambert-Eaton myasthenic syndrome (LEMS) patients. Two medications approved by the U.S. Food and Drug Administration became commercially available for patients. It is nearly unheard of to have approvals for a single rare disease within months of each other. Patients now…

A study provided an overview of the use of amifampridine (brand names  Firdapse and the recently approved Ruzurgi), along with other treatment choices for Lambert-Eaton myasthenic syndrome, including those for resistant muscle weakness. The review study, “Recent Advances and Therapeutic Options in Lambert-Eaton Myasthenic Syndrome,” was published…

Catalyst Pharmaceuticals has taken the first step to expand its commercial territory to cover Japan and get Firdapse (amifampridine phosphate) approved as a treatment for Lambert-Eaton myasthenic syndrome (LEMS) in the country. The company announced it has amended the original license agreement of Firdapse, which was signed…