This grant will support the development of a diverse and inclusive network that brings together LGS patient, their families, and researchers to accelerate diagnosis, treatments and cures.
The LGS Foundation is among a select group of rare disease organizations to receive third-year funding as part of the Chan Zuckerberg’s Initiative, Rare As One (RAO).
“In 2019, the Chan Zuckerberg Initiative launched the Rare As One Network, funding 30 patient-driven rare disease organizations to develop research networks, convene their communities, and identify shared researcher-patient prioritized goals in their disease areas. In just two years, each of the Rare As One Network grantees has made significant progress in advancing research — effectively organizing and diversifying their patient communities, catalyzing research networks, raising research funds, shaping research priorities, developing research-enabling infrastructure and industry partnerships, and launching clinical trials. They have demonstrated that with a motivated leader, access to well-designed training in a few key areas, and the opportunity to collaborate and learn alongside others, patient-led rare disease organizations can have a critical, and outsized, impact on research. After seeing the success of this Network and how patient organizations benefitted from the collaboration and network effect, CZI provided additional support to extend participation in the Network for another year.”
LGS Foundation Research Progress & Capacity Building Updates
Thanks to the Rare As One Network the LGS Foundation has been able to achieve many important milestones such as:
- Hosting our LGS Research Meeting of the Minds to discuss disease-modifying therapies. The event also served to garner support and interest in LGS research from our community, families, and scientists alike.
- Initiating a request for applications (RFA) to fund new research projects.
- Increasing communications to the LGS community to emphasize the importance of research and cures and to update on LGS Foundation-funded research.
- Hiring incredible new team members to support the ever-growing needs of our patient family community.
- Participating in CZI-organized trainings to improve our work in research, awareness, community building, family support, and education.
- Embracing new tools to decrease silos and improve teamwork.
LGS is a rare neurological disorder that causes damage to the brain as seizures go uncontrolled. The emergence of the hallmark “slow spike and wave” EEG pattern (a specific abnormal brain wave pattern), predominantly between 2 to 5 years of age, is a sign that seizures are pathogenically altering brain development and a short time window exists to stop them before irreparable damage is done.
“The LGS Foundation promises to be unrelenting in its search for better research and therapies.”
The LGS Foundation is building a network of researchers, clinicians, and patients to develop shared research priorities and co-develop new therapies. It aims to develop its strategic research vision around patient need and to be inclusive of patient voices. The LGS Foundation promises to be unrelenting in its search for better research and therapies for its community.
About the LGS Foundation
The Lennox-Gastaut Syndrome (LGS) Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support.
About the Chan Zuckerberg Initiative
The Chan Zuckerberg Initiative was founded in 2015 to help solve some of society’s toughest challenges — from eradicating disease and improving education, to addressing the needs of our local communities. Our mission is to build a more inclusive, just, and healthy future for everyone. For more information, please visit www.chanzuckerberg.com.