A girl with difficult-to-treat CDKL5 deficiency disorder (CDD), whose epilepsy later developed into Lennox–Gastaut syndrome (LGS), became seizure-free for more than 11 months after treatment with low-dose Fintepla (fenfluramine), suggesting this medication may be…
The Lennox-Gastaut Syndrome (LGS) Foundation has launched a collaborative research accelerator to unite experts, dismantle research roadblocks, and speed up the development of new treatments for LGS and related developmental and epileptic encephalopathies (DEEs).
A team of experts in Italy has proposed a framework for the routine monitoring of nonseizure symptoms in people with Lennox-Gastaut syndrome (LGS) throughout their lives. While the framework is a good place to start,…
Children with Lennox-Gastaut syndrome (LGS) show significantly higher blood levels of proteins linked to nerve injury and cell death than healthy children, a small study in India suggests. Researchers discovered that these biomarker changes directly…
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give…
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of…
As humans, and especially as caregivers, we do not give ourselves enough credit. It’s a widely accepted expectation that we should always strive to do better. I don’t necessarily disagree with that sentiment, as…
Little Brian is awesome. As I take this time to reflect on the totality of the life that currently exists for me, I struggle to maintain a positive outlook. Lennox-Gastaut syndrome (LGS) has completely upended…
No matter how cliché it sounds, if there’s anything I can get across as a Lennox-Gastaut syndrome (LGS) caregiver, it’s that the experience is truly an emotional roller coaster. At the time of writing my…
It’s good to be back and writing again. My last column was posted over a month ago, before the winter holidays. I wish I could say the entirety of my time away was spent in…
As we packed into the car, our daughter, Coralynn, was excited. The holidays were firmly behind us, and today was the first day of the local recreation center’s basketball season. Coralynn hadn’t played on…
“What should I get Brian for Christmas?” It’s a question I get every year, but as the years have passed, it’s become increasingly difficult to answer. I used to be able to say airplane…
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