You Spoke, We Listened!
Families Want to Know More About LGS Research
We surveyed our LGS patient family community about life with LGS and needed resources. We heard many things from you, including:
We need research towards better treatments and cures!
We need more family support groups and patient assistance!
We need access to information on the best care for those with LGS!
We need more information on research opportunities, including clinical trials!
Slowly, but surely, the LGS Foundation has been tackling this list. In 2021 we held our LGS Research Meeting of the Minds and laid out a plan to accelerate research toward the cures. In 2021 and 2022, we expanded our Patient Support Programs. And earlier this year we launched our LGS Learning & Resource Center to educate about the latest in LGS care. We have now begun to add information about research.
In the survey, 80% of LGS families said they would consider participating in a clinical trial, but only 30% had ever considered one. 90% of families said they were never informed of trial options. We need to change that. Be sure to check out the new Clinical Trials in LGS page to learn more about the 3 fantastic trials that are going on in LGS today. And stay tuned for our new page on LGS Research Studies (coming soon)!