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LGS Foundation funding has:
- Built a Community of Support with more than 6000 LGS patient family members.
- Funded 12 cutting-edge research grants to advance our understanding of LGS.
- Funded the first-ever animal model of LGS.
- Grown the LGS Family Conferences by more than 30% each time!
- Supported more than 50 Ambassadors from around the world who provide patient navigator assistance to new families starting their LGS journey.
- Continued to support families who have lost loved ones to LGS. You will always have a home in our LGS community. #NeverForgotten
- Conducted the first-ever survey of caregiver concerns in LGS getting more than 430 responses from 17 countries. This survey guided our Patient-Focused Drug Development
(PFDD) meeting to inform the FDA on unmet needs in those living with LGS and bring the Voices of the Community to therapy development.
- Co-hosted the first-ever Seizure Action Plan Awareness Week in 2020, which was a huge success and raised much-needed awareness of seizure emergencies.
- Advocated for new ICD-10-CM codes to be used for critical LGS research.
- Provided critical input on unmet needs in the patient community and guidance on new treatments in development. Since the LGS Foundation’s inception in 2008, five of the six drugs for use in LGS have been approved by the FDA. The LGS Foundation continues to be an active partner in ensuring the patient voice is present in all therapy development. Treatments for LGS include:
- 1998: Lamotrigine approved for use in LGS
- 2008: Rufinamide approved for use in LGS
- 2008: Felbamate approved for use in LGS
- 2011: Clobazam approved for use in LGS
- 2012: Topiramate approved for use in LGS
- 2018: Epidiolex approved for use in LGS
- Become a member of the Chan Zuckerberg Initiative (CZI) Rare As One Program.
- Helped secure much-needed funding from PCORI to study palliative brain surgery in LGS as compared to adding another anti-seizure drug.
- Since the LGS Foundation was founded, the annual number of research publications focusing specifically on LGS has more than tripled.