We’ve been telling you that CureGRIN needs your help to fund research into treatments and cures for GRI Disorder. 

But what does that look like?

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.

But first, a quick recap on how we got here.

Building a Research Roadmap

In 2020, CureGRIN brought together GRI families, researchers and clinicians to develop a Research Roadmap including identifying 10 Essential Questions that need to be answered in order to get to treatments and cures for GRI Disorder. (Our roadmap is widely viewed as best-in-class and has been used as a model for other rare disease organizations.)

This year, we developed a detailed operational plan on how to answer these questions. It outlines dozens of steps in four broad categories:

1. Collaboration: Fostering collaboration between researchers, clinicians, industry and patient families
2. Education: Teaching opportunities for families, researchers and clinicians
3. Access to patients: Connecting patients to research opportunities; and
4. Seed funding: Investing seed money in key research projects

Earlier this year, CureGRIN launched our first major research funding opportunity. We received 14 proposals from research teams around the world who are seeking a total of $2.3-million in seed funding.

We convened a review committee of researchers and family members. The review committee has conditionally recommended that we fund at least 9 of these projects.

How many research projects can we fund?

As of today, CureGRIN has $860,000 in our bank accounts – including the $61,000 we’ve already raised through this year’s Count Me IN campaign.

Approximately $150,000 of that is restricted funding from Chan Zuckerberg that is earmarked for our conference and other key programs, but can’t be spent on research. Another $140,000 is funding that we’ve set in reserve to ensure the continued operations of CureGRIN.

That leaves us with approximately $570,000 available to answer the 10 questions in our research roadmap. Depending on how much we invest in collaboration, education patient engagement projects, that’s enough to fund 2-3 projects – far short of the 9 recommended by our review committee. 

Help us to fund more research

Donations in this final week of our 2022 Count Me IN campaign will pay a huge role in how many research projects we can fund. 

What can you do?

If you’re already running a Count Me In campaign, make this last week count. Don’t just hit your goal, blow through it. Remember, it’s fine to collect donations to your page past November 30.

If you’d still like to set up your own donation page, it’s not too late. Sign up here.

If you’re not setting up a page, please donate to another family’s page. Scroll to the bottom of this page to see a list of our fundraisers.