Imagine if your child, or a loved one, could not walk or speak and had motor impairment, debilitating seizures, and developmental delays. This is life today for many of the nearly 1,000,000 people worldwide living with Lennox-Gastaut Syndrome (LGS). But it doesn’t have to be that way. Recent studies have shown that with early intervention we can slow the progression of LGS and in very rare cases even stop the disease. The LGS Foundation has a plan. We are finalizing the scientific foundational work necessary to test therapies in clinical trials. Please take a moment to read on and learn how our Finding a Cure Together campaign will change the lives of people with Lennox-Gastaut Syndrome and, potentially, millions more who have similar related disorders.
LGSF Finding a Cure Together Campaign
The LGS Foundation has made great strides in increasing understanding of the unknowns of Lennox-Gastaut Syndrome. However, there is still so much progress to be made. The LGSF “Finding a Cure Together” campaign will allow us to crowdsource, prioritize, and really focus on the unmet needs of our rare epilepsy community.
As we follow each of these steps the LGSF together with all of you, makes the journey to the top of the mountain easier. LGSF has and is making great strides in the Growth of our Community through support groups, local Family Ambassadors, and connecting with each other at the LGSF family conference and MeetUps. Listening and Learning will help to give a focused understanding of community needs. We need you to share your voice through surveys, studies like the Natural history study and the PFDD - Voice of the Patient. With our community voices heard, and needs identified, Funding Research with those priorities as the goal will aid us in our steps to a cure. The research Results will paint the landscape of our natural history database, enhance our research network and set clinical practice guidelines for LGS patients. Bringing all the pieces together and exploring the effectiveness of disease-modifying treatments through Ongoing Research will take us closer to the cure for LGS.
Your voice is important for us to collaborate and bring solutions to the unmet needs of the LGS community. It is our hope, with your help, to close the gaps that might exist in medical care, treatments and the research of LGS. LGSF is currently funding two exciting projects that will help answer the mysteries behind LGS.