We are excited to announce, in collaboration with the GRIN2B Foundation, the submission of CureGRIN’s Letter of Intent for the Chan Zuckerberg Rare as One Initiative.
The Chan Zuckerberg Initiative is a great opportunity for U.S.-based, patient-led rare disease 501(c)(3) organizations to develop and launch collaborative research networks in partnership with clinicians and researchers. This RFA is part of the Rare As One Project’s goal to lift up the work that patient communities are doing to accelerate research and drive progress against rare diseases.
A research network is particularly important for CureGRIN and GRIN disorders because there are a range of potential technologies that could lead to breakthrough therapies and cures. Exploring the various options will require researchers with a multitude of specializations, willing to share information and collaborate.
We are fortunate to have the world’s leading NMDA receptor and GRIN genes experts on CureGRIN’s Scientific Advisory Board that have endorsed CureGRIN’s application. Dr. Stephen Traynelis, Director of the Center for Functional Evaluation of Rare Variants and Professor of Pharmacology at Emory University, is CureGRIN’s lead Researcher. His lab uses electrophysiology techniques to determine how variants in GRIN genes affect the function of NMDA receptors. Dr Timothy Benke, Professor and pediatric neurologist at Children’s Hospital Colorado and the University of Colorado, is CureGRIN’s lead Clinician. He is leading the efforts in partnership with Dr. Traynelis to develop a registry of GRIN patients as a prelude to a natural history study.
CureGRIN Foundation’s goal is clear and bold: To find cures and therapies for GRIN disorders. To do this, we need to bring together clinicians and researchers from universities, hospitals, and biotech companies. Collaboration on theories and results, animal models and technologies is crucial.
GRIN disorders and the struggles we face as parents is challenging enough. But we do not have to face it alone. We are grateful for the support from other GRIN parent groups and foundations including:
Austin’s Purpose (GRIN2A)
Les Sourires GRIN1 (France)
GRIN2A Support Group
By the end of August, after an initial round of review, a select set of organizations will be invited to submit a full application. If awarded, each grant will be up to $450,000 total over a period of two years.
Stay tuned to find out if CureGRIN is fortunate enough to be selected for the full application.
We are sincerely thankful for everyone around the world who has expressed interest in helping us find a cure for GRIN disorders.