Parents of GRIN Disorder patients and researchers met at Emory University this past week for two days of sharing and collaboration at the 2019 CFERV Conference on GRIN Variants.
This was the first Pan-GRIN Conference and it was profound for many reasons. The goal was to make this convening a collaborative and inspiring event for both scientists and parents for the purpose of helping us gain a better understanding of how GRIN disorders and ultimately, what all this research means for families.
More than 130+ attendees including families of GRIN1, GRIN2A, GRIN2B, and GRIN2D patients and scientists from eight countries shared their latest results and learnings with each other.
The theme of the conference says it all—Working Together to Break Barriers. What we heard throughout the conference is this is exactly what is needed to find a cure:
1. Collaboration between researchers: sharing everything from ideas and research to animal models and technologies
2. Collaboration between foundations and parent groups
3. Funding: We need everyone working towards raising funds for research. Everything helps bring us closer to finding a cure.
Top Takeaways: For parents, the top learnings were:
There is a world-wide community of researchers working on GRIN Disorders from different perspectives and they agree that a cure for GRIN Disorders is possible.
We are one: GRIN genes (GRIN1,2A, 2B, 2D) have more in common than many initially thought. Discoveries for one GRIN gene can have a lot of relevance to the others.
The importance of participating in the registries: CFERV study, GRIN Variant Patient Registry (contact: Jenifer.Sargent@childrenscolorado.org), and Simons Searchlight (now includes GRIN1). Unless you sign up to participate, researchers cannot get an accurate picture of the patients. They need our data to help our children.
An overwhelming number of parents/caregivers are committed to finding a cure. It’s up to us.
CureGRIN announced we will host next year’s conference that will take place in Boston. We will continue to build upon this research foundation and remain steadfast in our commitment to finding a cure. Stay tuned for more information.
GRIN Foundations and GRIN support group leaders including GRIN2B Foundation, CureGRIN, GDRF, Austin’s Purpose, GRIN2B Europe, and GRIN2A Parent Support Group met to explore how we can come together to collaborate even more in the future.
Post Event Survey If you have not completed the Post Event Survey, please provide your feedback with us so we can continue to develop and grow this event into a productive patient-led international scientific meeting with shared research priorities. If you didn't receive the survey link, send us a quick email at firstname.lastname@example.org.
Thanks for helping us to CureGRIN!
Denise Rehner, President and Head of Marketing Communicatons, CureGRIN Foundation