To say I am not a morning person is an understatement. Just ask my husband. By the time he’s out of bed, gone for a run, and showered, I’m still pressing the snooze button for the 12th time. Springing out of bed is just not my thing. No matter how…
Into the Unknown – a Column by Jendi Solka
As a mother to a child with Lennox-Gastaut syndrome (LGS), I’ve learned that our son’s quality of life changes with the tides. When our son, Brian, was diagnosed with LGS, we asked what any parent would: What should we expect? Is there a cure or viable treatment? What is the…
It’s July, and for a teacher like me, it’s the peak of summer training. I’m training to prepare for a new grade level I will begin teaching in the fall. Normally, I would attend in-person training, but being in the middle of a global pandemic, I am instead attending the…
Recent
- Taking Time to Acknowledge Our Efforts as Parents and Caregivers
- Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients
- Brian Is a Happy Little Man
- Pandemic Won’t Stop Rare Disease Day on Feb. 28
- I’m Ready to Embrace My Emotions as an LGS Caregiver
- International Epilepsy Day Shines Spotlight on Brain Disorder Affecting Millions
- NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
- Jazz Acquires GW Pharma and Epidiolex, Other Potential Cannabinoids
- Study Reveals Molecular Details of Epidiolex Action
- This Is Why I Had to Sign Off