Our world has changed over the past few years. Around the globe, COVID-19 has altered the way we all live. While we are no longer required to stay indoors and close our shops like in 2020, the world is still different than it was. Our new reality includes frequently…

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…

People affected by Lambert-Eaton myasthenic syndrome (LEMS) and other rare diseases in the U.S. are encouraged to share their experiences through a new initiative called “What’s Your Story?” Submissions from patients, as well as caregivers and family members, are being accepted through March 2 via an online…

Given the most recent COVID-19 surge, it seems that many people are resigned to getting sick with the new coronavirus variant, omicron. I pushed hard against this idea because our daughter Grace, 16, has the autoimmune disease Lambert-Eaton myasthenic syndrome. Although many have described omicron as just a bad cold,…

Not long ago, my family traveled to San Francisco to visit our son and his new wife. It was our first chance to travel since our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). One of the highlights of the trip, after seeing our son…

“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…

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 time. She was able to do very little outside the house…

We are living in unprecedented times involving a pandemic and political and social unrest that has been debated in many homes and communities.  Even amid all the disagreement and opposing views, I think most of us can agree that the benefits of community have been…

Despite the COVID-19 pandemic, Catalyst Pharmaceuticals is still expecting Firdapse (amifampridine) to be approved for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in Canada later this year, the company announced in an update. The company’s new drug submission (NDS) to Health Canada seeking approval…