The GRIN community of families, researchers and clinicians met virtually on September 12^th. Like so many conferences and events, the 2020 GRIN Conference that was to take place in Boston, was moved to an online platform due to the global pandemic. This is the new normal and the world has shifted to adjust.

Rare disease families are used to remaining flexible and adaptable. Our lives can be unpredictable and therefore difficult to schedule activities. But when your child has a rare disease that has no cure, and the scientists that work on your child’s disorder volunteer their Saturday to talk about their latest research, we drop everything else to prioritize listening. That is exactly what ~300 parents and scientists from around the world did for 6+ hours of sharing and collaborating.

GRIN Community Expands

The most exciting news that came from the meeting is there is tremendous momentum taking place in the GRIN Community. We have seen the research community working on GRIN Disorder grow from just a handful of scientists to now dozens of experts.  This is due in large part to GRIN parents’ advocating and building awareness. Many GRIN parents have become experts in their kid’s diagnosis, studying the little-known science, doing whatever they can to educate others, talking with doctors, researchers, and scientists to push for a cure. We are ever grateful to the Chan Zuckerberg Rare as One Network that has given us the tools to build a collaborative research network and allowed us to leverage the knowledge of other rare disease organizations that face the similar challenges.

The GRIN Patient Community has also grown. Just a few years ago, initial GRIN meet ups focused on individual GRIN genes without much networking between the different variants. We now have a better understanding of the GRIN gene similarities and the need to work together to find treatments and cures. GRIN foundations and parent groups are working together on a global scale to expand our community and build synergies.

Session Highlights and Recordings in Eight Languages

The conference kickoff took place the day prior with two virtual happy hour network sessions that set the stage for an interactive day to follow.  The GRIN Virtual Conference sessions were geared towards educating families, sharing family and patient stories, and providing updates on the latest GRIN Research. Audio recordings can be accessed here. In addition to English, presentations are available with subtitles in Russian, Portuguese, Spanish, French, German, Dutch, and Italian.

GRIN Genes Research Roundtable

Scientist and researchers were invited to the first GRIN Genes Research Roundtable held September 24^th, where they could dive into more technical information and learn what others are working on. GRIN Genes Research Roundtables bring together leading GRIN, NMDARs, and other ionotropic receptor researchers to share research updates and exchange new ideas. Our next GRIN Genes Research Roundtable is scheduled for Thursday, October 29, 2020. If you are a GRIN / NMDA researcher or clinician, please feel free to reach out to keith@curegrin.org to be added to the next meeting invitation.

Funding Updates

Thanks to motivated and determined families, last year, CureGRIN raised $195,000 plus an additional $30,000 through University of Toronto for GRIN Research. With this funding, CureGRIN announced a $75,000 grant award to CFERV to perform 50 functional analysis.

Much more funding is needed to help continue progress towards a cure for GRIN Disorder. GRIN families and supporters can help by participating in the 2^nd upcoming Count Me GRIN campaign that will take place all November. Stay tuned for more information on how to set up a peer-to-peer fundraising campaign featuring a personalized page with a GRIN story and picture.

GRIN2B Europe Virtual Conference in November

GRIN2B Europe is hosting a virtual conference Saturday, November 7^th. Find more information including how to participate on the GRIN2B Europe Facebook page.

GRIN Conference 2021

CureGRIN will host the 2021 GRIN Conference. Although this event is currently scheduled to take place both in person and virtually April 29 – May 1 in Boston, Massachusetts, we will continue to monitor the Covid-19 virus situation. As much as we all value the connection that in person meetings hold, the health and safety of our GRIN Community is our top priority. We will advise of any changes to the venue and date if needed. 

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.

Thanks for helping to CureGRIN!

Denise Rehner, President and Communications Lead, CureGRIN Foundation