News

One of the mysteries about GRI disorders is why some patients are far more affected than others. It was interesting to find out that even among 8 patients with the same exact variant, there was a wide difference in abilities.

The potential treatment also led to clinical improvements in other symptoms, and was well tolerated from a safety perspective.

Last week, CureGRIN brought together the world’s top experts in GRI Disorder Research for a two-day symposium in Toronto, Canada where we discussed the suitability of every type of treatment for each GRI gene and class of variants. 

My name is Kat Reiher, I am the lead Ambassador for CureGRIN, and I wanted to write about Rare Across America!

In just one week, nearly 150 families representing 10 genes and 16 countries have completed and submitted the GRI Census.

New research revealed involving a clinical trial through GRIN Therapeutics, as well as an update to research on GRIN2B mice.

The U.S. Centers for Disease Control met last month to consider adding ICD-10 codes for GRIN, GRIA, and GRIK Disorders. ICD-10 code applications are considered by U.S. officials and adopted by the World Health Organization. There is now a public comment period through May 17, 2024.

A recently published clinical trial found that a new treatment, L-serine, appeared to have some positive effects in a small group of children with GRIN Disorder.

Since our founding in 2019, CureGRIN has been working tirelessly alongside researchers, clinicians and industry to accelerate the path to treatments and cures. There are many promising compounds and genetic treatments, but there are barriers in getting those to clinical trial. Adding ICD-10 codes for these nine genes would remove a significant barrier to clinical trials, by helping us to better understand where our patients are located.

Since our founding in 2019, CureGRIN has been working tirelessly alongside researchers, clinicians and industry to accelerate the path to treatments and cures. There are many promising compounds and genetic treatments, but there are barriers in getting those to clinical trial. Adding ICD-10 codes for these nine genes would remove a significant barrier to clinical trials, by helping us to better understand where our patients are located.

Today, I want to be transparent with you about how much money we have to spend on treatments and cures, how far that will take us, and exactly why we need your help to go further.

CureGRIN is now accepting applications for research funding that will help advance and accelerate our search for treatments and cures for GRI Disorder (GRIN, GRIA, GRIK and GRID). 

Do you know our next Treasurer? CureGRIN Foundation is looking for a Treasurer located in the United States to join our Voluntary Board of Directors. This person does not need to be a family member of someone with GRI Disorder but they must be committed to our mission. If you know anyone with finance or accounting experience interested in serving the global GRI community, please nominate them by providing their contact information to heather@curegrin.org by May 3, 2022.

We’re excited to announce that CureGRIN is hiring a Communications Coordinator to help us expand awareness for GRI Disorder!

The more work we get done through this first round, the faster we’ll get to better treatments and cures.

Investments will be focused on answering the 10 “essential questions” that were identified in consultation with families, researchers and clinicians.

Would you like to join us on our mission to improve the lives of people living with GRIN, GRIA and GRIK Disorder? If you are a Parent, Grandparent, Sibling, or Caregiver of a person with GRIN, GRIA or GRIK Disorder please consider applying for the CureGRIN Board of Directors.

Welcome Madison!

One lucky GRI family will win a suite at next year’s GRI Conference in Boston.

Meet CureGRIN’s newest board member, Heather Cartwright.