2024 will see tremendous progress in science and clinical trial readiness

2023 Highlights

Research. CureGRIN awarded five grants worth $671,250 in 2023. These funds enabled research into the discovery and validation of potential treatments (pharmacological and genetic), identification of biomarkers, and use of AI for better understanding of individual variants. We also began in-house research, starting with a study into the causes and prevalence of mortality in GRI Disorder. We continue to see strong results from our GRI Genes Roundtable meetings, with increased collaboration, and GRI researchers transitioning from basic research to disease-focused research.

Industry Partnerships. GRIN Therapeutics launched the first commercial clinical trial for GRI Disorder in 2023. Their drug candidate, Radiprodil, could help GRIN patients with Gain-of-Function variants. Meanwhile CureGRIN continued to build relationships with pharmaceutical and biotech companies, and at least 7 are now exploring developing treatments or cures for GRI Disorders.

GRICON23. Our first in-person conference since 2019 featured two and a half days of family discussions, scientific presentations, biospecimen collections and collaboration-building in Boston. More than 300 people joined us live in person or virtually.

Advocacy. CureGRIN worked with GRIN2B Foundation and Dr. Tim Benke to lobby the US Centers for Disease Control and Prevention for ICD-10 codes for our nine most common genes (GRIN1, GRIN2A, GRIN2B, GRIN2D, GRIA1, GRIA2, GRIA3, GRIA4 and GRIK2). While we’re still waiting to hear back from the CDC, we’re happy to share GRIN2A already has a code in the next-generation ICD-11 list, which is already in use in several countries outside of North America.

Meet & GRIs. CureGRIN brought together families in New York, Washington DC, Chicago, Los Angeles-Orange County, and San Francisco-Oakland. Families had the opportunity to hear talks from leading researchers, and to meet with, and learn from, other local families.

Coming in 2024

Clinical Trial Readiness. With broadening interest from drug companies, it’s time to ramp up our efforts to ensure the GRI community is ready for multiple clinical trials we expect over the next few years. This readiness includes identification of biomarkers, understanding how to track improvements in symptoms, collection of patient biosamples and the GRI Census.

GRI Census. Watch for the first-ever GRI Census launching during GRI Disorder Awareness Month in March of 2024. We’re partnering with other GRI patient organizations on this simple registry designed to take no more than 15 minutes to complete. We’ll be collecting basic symptomatology and demographic data, as well as top treatment priority for everyone living with GRI.

Research. Our Scientific Grant Review Committee has already evaluated and ranked the latest funding applications. Our board will finalize the next round of funding decisions in late February. Our revenue over the next two months will define how many programs we can fund.

Live Events. GRICON24 will take place virtually on April 27. Registration will open in March. In addition, Meet & GRI is going global in 2024 with events in London, England on March 2 and in Toronto, Canada on April 6.

First we mourn. Then we fight.

We can’t turn the calendar over on 2023 without taking a moment to remember the GRI children who left us too soon. We’re sending all our love to Carter, Ffion, Julian, Lily, Arthur and any other Angels we might have missed.  

These tragic deaths just make me want to fight harder. Please join me and the rest of the CureGRIN team by volunteering, fundraising and/or donating.