Rare Disease Week on Capitol Hill
On the last day of February every year, we pause to honor those who are living with, or have passed away from, a rare disease. The last day of February after all, is the rarest day of the year. It’s…
The Balancing Act on Lifetime TV Celebrates Rare Disease Day Watch Now: The Lennox-Gastaut Syndrome Foundation: Working Together to Find a Cure Executive Director of the LGS Foundation Dr. Tracy Dixon-Salazar sits down with Montel Williams to discuss the Foundation’s…
The LGS Foundation is proud to be part of the Chan Zuckerberg Initiative (CZI) Rare As One Network – a group of 50 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases. The LGS…
What is Topiramate? LGS is tough. Finding information shouldn’t be. That is why we provide information about this and other medications often used in LGS. We hope you find this information useful as you navigate your LGS journey. Topiramate, sold…
Thank you for the many ways you give to the LGS Foundation. Because you give, we can give to others. We invite you to follow throughout December to celebrate 12 important moments we’ve impacted together. Please give, and share these moments…
A Clinical Study for 2 to 5 Year Old Children With Epilepsy
The Stellina Study is a clinical study evaluating a single dose of diazepam nasal spray (VALTOCO) as a rescue medication in children aged 2-5 who have been diagnosed with epilepsy. The objectives of the study are to assess the pharmacokinetics…
It is a pleasure to introduce Our Board of Directors to You Our Board of Directors brings a wealth of experience and expertise to the LGS Foundation, united by their passion for our mission to end the devastation and suffering…
NOT RECRUITING
The PACIFIC Study is a clinical trial for a drug called LP352. This study will assess the safety and tolerability of this drug as well as examine changes in seizure frequency over the 90-day treatment period. The study plans to…
What is Carisbamate? LGS is tough. Finding information shouldn’t be. That is why we provide information about this and other medications often used in LGS. We hope you find this information useful as you navigate your LGS journey. Carisbamate (the…
Being a caregiver for a loved one with LGS is a commitment unlike any other. Caregiving requires limitless amounts of energy, empathy, and patience. While most caregivers will tell you that taking care of a loved one is a genuinely…
