Advocates to mark International LGS Awareness Day on Nov. 1
Campaign focuses on sharing family stories to highlight rare form of epilepsy
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Advocates around the world will be coming together to raise awareness about Lennox-Gastaut syndrome as part of International LGS Awareness Day on Nov. 1.
This Sunday, advocates around the world will be coming together to raise awareness about Lennox-Gastaut syndrome (LGS) as part of International LGS Awareness Day.
For this year’s awareness day on Nov. 1, the LGS Foundation is running a campaign called “Faces of LGS: Real Stories, Real Research.” This initiative aims to amplify the voices of families affected by LGS by sharing their stories to raise awareness not only about the disease itself but also about how it affects day-to-day life for those who live with it.
“LGS hides in plain sight. Families live with it for decades, through childhood and into adulthood, often without anyone around them understanding what they face,” Tracy Dixon-Salazar, PhD, CEO of the LGS Foundation, said in a press release.
“What isn’t seen isn’t studied, and what isn’t studied can’t be cured. On November 1, we ask the world to see LGS,” added Dixon-Salazar, whose daughter, Savannah, died last year from complications of LGS.
Fundraisers will help fuel research
LGS is a rare form of epilepsy that’s characterized by multiple types of seizures as well as developmental abnormalities. It often takes years for families to get an accurate diagnosis, and even after the condition is accurately identified, management is often difficult and complex. That’s why awareness, to help people get diagnosed and raise support for research into new therapies, is so important.
“Every conversation, every story shared, every awareness activity, and every dollar raised helps move us closer to better treatments, stronger support, and breakthroughs for everyone affected by LGS,” the LGS Foundation writes on its website.
To help advocates spread the word, the foundation is offering educational resources and cards that kids with LGS can use to introduce themselves and raise awareness while trick-or-treating this Halloween.
The foundation is also running fundraisers to fuel research, as well as an initiative to light up landmarks for LGS awareness throughout the first week of November. The foundation is also continuing to encourage families with LGS to get involved in its LGS-CORE Study, a research project aimed at learning more about this rare and poorly understood disease.
Every conversation, every story shared, every awareness activity, and every dollar raised helps move us closer to better treatments, stronger support, and breakthroughs for everyone affected by LGS.
In the U.S., International LGS Awareness Day kicks off National Epilepsy Awareness Month, which runs throughout November to raise awareness of LGS and other forms of epilepsy. This year’s theme focuses on the importance of community for families navigating epilepsy, according to the Epilepsy Foundation.
“Hope grows through the connections we build with family, friends, caregivers, healthcare providers, advocates, and peers who offer support, understanding, and encouragement,” the foundation writes on its website, which offers resources to raise awareness on social media or in-person, as well as registration for seizure first-aid training and opportunities for families to share their stories.
Later this month, from Nov. 16-17, the advocacy group Sofie’s Journey is hosting its Epilepsy Awareness & Education Expo and Epilepsy Awareness Day at Disneyland — an annual event that brings together people with epilepsy and doctors who treat it to share stories, learn, and have fun.
