CureGRIN Receives Grant to Build Global Research Network

$450,000 Award from Chan Zuckerberg Initiative is Part of Rare As One Project Investing $13.5 Million to Drive Progress Against Rare Diseases

CureGRIN: Chan Zuckerberg Rare As One Grant Recipiant

CureGRIN Foundation today announced it is the proud recipient of a $450,000 grant from the Chan Zuckerberg Initiative (CZI) Rare As One Project. Participation in the Rare As One Network will allow CureGRIN to accelerate a cure for GRIN Disorders by significantly increasing awareness and attracting hundreds of scientists and clinicians to its cause.

“We are so excited for this opportunity to fast-track a cure for GRIN Disorders and are looking forward to growing our research network,” said Denise Rehner, President and Co-Founder, CureGRIN. 

The CZI Rare As One Initiative is a two-year funding opportunity to develop and launch collaborative research networks in partnership with clinicians and scientists. The program will provide support to 30 rare disease foundations, each receiving a $450,000 funding grant as well as tools and capacity-building support and training.

“No one is more committed to finding cures for rare diseases than the patients and families of those affected by these disorders,” said Priscilla Chan, Co-Founder/Co-CEO of CZI. “We are proud to support patient-led organizations as they pursue diagnoses, information, and treatment options in partnership with researchers and clinicians.” 

The grant will allow CureGRIN to invest in a small team of people dedicated to identifying and building relationships with hundreds of researchers and clinicians around the world. Dr. Stephen Traynelis of Emory University will support this initiative as lead researcher and Dr. Timothy Benke of Children’s Hospital Colorado will serve as lead clinician.

A portion of these funds will be utilized to support a conference on GRIN Disorders, translation of CureGRIN's website into multiple languages, and creation of a private online forum for researchers and families.

“CureGRIN’s participation in the Rare As One Network will allow us to break down silos and enable the collaboration between parents, researchers and industry that is so crucial to our success,” said Keith McArthur, CEO, Head of Science and Co-Founder, CureGRIN. “As parents of children with a mutation in a GRIN gene, Denise and I have dedicated our lives to finding therapies and cures for GRIN Disorders and this grant will play an integral role in helping us continue to work toward progress and change for our community.”

Alongside the Rare As One grant’s focus on capacity-building, CureGRIN will continue to fundraise in support of further research focused on cures for GRIN Disorders.

GRIN Disorders are rare genetic conditions that are believed to impact tens of thousands of people around the world. They are typically not inherited but occur as spontaneous genetic variants. GRIN Disorders have serious life-limiting consequences. Many GRIN patients have developmental delays, including severe intellectual and physical disabilities. There is no cure for GRIN Disorders and no FDA-approved GRIN-specific therapies. Current treatment options exist only for managing symptoms, such as controlling seizures, or therapies to increase strength and function. 

Source: CureGRIN Foundation


Categories: Medical Research

Tags: Chan Zuckerberg, CureGRIN, epilepsy nonprofits, GRIN Disorders, GRIN1, GRIN2A, GRIN2B, GRIN2D, patient advocacy, public awareness, Rare As One, Rare Disease

About CureGRIN Foundation

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CureGRIN is a parent-led foundation committed to improving the lives of people living with GRIN Disorders. Our goal is to find cures and therapies for people living with disorders caused by variants in the GRIN1, GRIN2A, GRIN2B, and GRIN2D genes.

CureGRIN Foundation
5732 Regal Oak Lane
Parker, CO 80134
United States