[INSERT YOUR CHILD'S NAME] Story

[INSERT YOUR CHILD'S STORY BELOW]

Please use this space to tell us a little about your child and the importance of a cure for GRI Disorders. 

Suggested word count is 250-450 words.

We have hope and we are grateful for your support in our journey to a cure.

Please Help Our Kids

GRI families like ours need your help to find treatments and cures for our kids.

Research teams from around the world have requested millions of dollars from CureGRIN to fund their research. 

Sadly, they don’t get enough money from governments and universities to develop life-changing medicines for our kids. They’re ready to test drugs and gene therapies, but they can’t do it without us.

The more money we raise in during Count Me In, the more of the following projects we can fund:

1. Helping scientists to prioritize and fund patient-centered GRI research. This includes funding research that lines up with patient priorities identified in the GRI Census and treatment priorities identified at the GRI Symposium.
2. Partnering with pharmaceuticals to develop treatments and cures for GRI Disorders. This includes creation of our Guide to Developing Treatments and Cures for GRI Disorders and in-person meetings with key industry leaders. 
3. Advancing clinical-trial readiness across the global GRI Community. This includes collection of biosamples and identifying family priorities through the GRI Census.
4. Championing advocacy for people with GRI and their families to government, regulators and funding agencies. Examples include our push to get ICD codes for GRI Disorders, and our upcoming Listening Session with the US Food and Drug Administration
5. Educating and connecting the global GRI community of patient families, researchers, clinicians and industry. This includes funding regional family meetups, developing an information packet for physicians, and planning for GRICON25.

What are GRI Disorders?

GRI Disorders are a set of rare genetic diseases affecting the brain. 

We are learning more about symptoms and features of GRI disorders every day. Some people may have more or less severe symptoms. Most children with a GRI Disorder experience developmental delay, intellectual disability, epilepsy (seizures) and hypotonia (low muscle tone). 

Common Co-diagnoses

• Autism Spectrum Disorder
• ADHD
• Lennox Gastaux Syndrome

Visit curegrin.org to view more details about each gene and additional symptoms.

While there are drugs that can help alleviate symptoms for some children, there are no approved treatments or cures for GRI Disorders.

Patients with a GRI Disorder have a variant in one of the GRIN, GRIA, GRIK or GRID genes. These include GRIA1, GRIA2, GRIA3, GRIA4, GRIK2, GRIK5, GRIN1, GRIN2A, GRIN2B, GRIN2D and GRIN3A.

Can we count on your support?