As Brian’s Symptoms Worsen, It’s Getting Harder to Manage
When diagnosed with Lennox-Gastaut syndrome, our son, Brian, was still developing normally. Every day built upon the previous day, which was amazing to watch. ... Read more
Updates
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EU Panel Favors Fycompa’s Age Range to Include Children Younger Than 12
A European Medicines Agency (EMA) committee has recommended that the age range of Fycompa (perampanel) be expanded in the European Union (EU) to include children 4 and older ... Read more -
First Comes Love, Then Comes Marriage, Then Comes a Baby With LGS
Lucky 7/11 My husband and I just celebrated our “7/11”: seven years married and 11 together. We often receive props for being the “model ... Read more -
Epidiolex-Valproic Acid Combo Can Lower Platelet Counts in Children With LGS, Study Finds
When used alongside valproic acid, Epidiolex (cannabidiol) can increase the risk of thrombocytopenia in children and adolescents with drug-resistant forms of epilepsy, such as Lennox-Gastaut ... Read more -
It’s Been One of Those Days
As an old episode of the TV series “The Office” plays in the living room, my daughter, Coralynn, is falling asleep on the couch. ... Read more
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Soticlestat Safely Lowered Seizure Frequency in Children With LGS, Top-line Data Show
Treatment with soticlestat (OV935/TAK-935) safely led to a clinically meaningful reduction in the frequency of ... -
Brian Accomplishes a Learning Goal
It’s been a long five months in quarantine. Teaching virtually while supporting my own ... -
Same But Different Photo Contest Celebrates People With Rare Diseases
Same But Different, a U.K. nonprofit that uses the arts to bring communities together, ... -
Brian Has His First Day of Kindergarten
On my son Brian’s first day of kindergarten, he woke up nicely, babbling to ... -
Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, ... -
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