Thank you GRIN Community!

2020 has been challenging for us all. But thanks to the dedication and passionate support of the GRIN Community, including our families, friends, and neighbors, CureGRIN Foundation hit the ground running and has accomplished much in a short amount of time.

One of the biggest pivotal moments for our GRIN Community to date has been the opportunity to participate in the Chan Zuckerberg Initiative Rare as One project to build a global research network. In February, we announced that CureGRIN was selected, along with 30 other rare disease organizations, to participate in this extraordinary opportunity to help accelerate a cure for GRIN Disorder.

Below are just some of the other highlights in our mission to find cures and therapies for GRIN Disorder.

GRIN Research Accomplishments

• Connected researchers and physicians from around the world and encouraging them to share information, ideas and animal models.
• Awarded a $75,000 Grant to Emory University to conduct functional analysis tests on 50 variants matching people with GRIN Disorder.
• Initiated groundbreaking research studies by connecting biotech companies with GRIN researchers.
• Brought together hundreds of GRIN parents, researchers and clinicians for a virtual GRIN conference with translations in eight languages.
• Launched the GRIN genes roundtable with participation from more than 50 GRIN researchers and doctors from more than a dozen countries.
• Initiated a Scientific Newsletter summarizing the latest research related to GRIN Disorder.
• Hired Research Coordinator, Meagan Collins.
• Conducted a large-scale scientific audit of all published research on GRIN Disorder in order to identify gaps and opportunities for future research.
• Launched the GRIN Family Patient Survey to better understand what is most important in new therapies for GRIN from parents’ perspectives.

GRIN Community Accomplishments

• Collaborated with other GRIN foundations and groups to create and celebrate GRIN Disorder Awareness Month in March — the first to feature all pathogenic causing GRIN genes.
• Joined forces with Austin’s Purpose and elected Paul Wasielewski as a CureGRIN board member.
• Became Global Genes Rare Foundation Alliance Member to leverage all the invaluable resources, support, and connections from other rare disease organizations.
• Provided $16K in financial assistance to 16 GRIN families impacted by the global pandemic.
• Hosted our first virtual challenge with “Get Moving for GRIN” in August that raised over $15K.
• Created the Stories of GRIN book featuring stories of GRIN families from around the world. (On sale now on Amazon!).
• Launched our 2^nd annual Count Me GRIN campaign to fund GRIN Research.

Like so many other non-profits, we’ve also had our share of challenges this year. The global pandemic impacted our planning for live events. 2020 was the year we were to ramp up our fundraising campaigns with in-person events such as with golf tournaments and galas. And although we have not met our fundraising goals, we are tremendously proud of the what the GRIN Community has achieved.

But the year is not over yet.

As we come to the end of 2020, we are still hoping to raise additional funds though the Count Me GRIN and End of Year campaigns. If you have not yet donated and have the ability to help us get closer to our goal, we would be honored and grateful. Don’t forget to check if your employer matches so you could double the impact. We also appreciate you sharing, liking and commenting our posts to help spread awareness of GRIN Disorder.