Last month I wrote to tell you about our $250,000 campaign to fund research into a cure for GRIN Disorders.
We are recruiting 100 GRIN Champion families who will each try to raise $2,500 to fund research for a cure. We've signed up 50 GRIN Champions so far.
We're halfway there, and we're living on a prayer that you will help us reach our goal!
We can’t afford to wait. It’s up to us, so please consider signing up now so we can provide the tools you need to be a GRIN Champion starting on November 1. We are setting up team pages and email and social media content to help our GRIN Champions tell the world about how GRIN Disorders affect their loved ones.
Spreading the Word
When we tell someone our loved-one suffers from a GRIN Disorder, most people have never heard of it and we need to explain something that we ourselves have struggled to understand. So, we often explain that GRIN Disorders are caused by a change in one of four GRIN genes (GRIN1, GRIN2A, GRIN2B, and GRIN2D). We tell people that these genes contain the code to create NMDA receptors, which are essential for learning and memory. That’s the part that’s so devastating because if you don’t have the essential ingredient that is crucial for learning and memory, well, that’s why are loved ones are so severely affected. It’s important for others to know the impact, that many GRIN patients are non-verbal, unable to walk, and many cannot feed, toilet themselves, and that they often suffer severe and frequent seizures that are not responsive to medical therapies.
Sharing Our Stories is Powerful
I recently had a stranger approach me in the grocery store because she noticed my CureGRIN logo and tagline on the back of my t-shirt that read “Funding Research for GRIN Disorders.” She said, somewhat excitedly, “my neighbor has GRIN”. As it turns out, this stranger’s neighbor is a CureGRIN board member. The fact that she remembered what one of us parents told her about her son’s GRIN Disorder was such a remarkable moment for me because it solidified the fact that sharing our stories brings awareness about GRIN Disorders.
Awareness is Not Enough
But here’s the thing.
We need more than just awareness because informing the world about GRIN Disorders is great, but it’s not going to find a cure. We know that a cure for GRIN Disorders is possible, but we need all families to help us to raise money to fund research. Families play a crucial role in helping us make a cure possible for all people living with GRIN Disorders.
Together, we can drive change to find a cure. Can we count on you?
Learn more and sign up to be a GRIN Champion at https://www.curegrin.org/count-me-grin