Connect IconWELCOME TO THE GRIN2B FAMILY

Receiving the diagnosis of a GRIN2B variant for your child can trigger many different reactions: some find it overwhelming to cope with, and some find it a relief to finally get some answers. Regardless of your situation, we are very happy you found us.

GRIN2B is rare, but it is important to know you are not alone. We hope you will find the information on this website helpful.

CONNECT ONLINE

It’s how many of us parents found each other to begin with. If you are a parent of a child with GRIN2B, be sure to like our Facebook page and also join the Parent Support Group. The latter is a private group where parents can share any and all thoughts about this complicated diagnosis with people who understand it. Please note – this private Facebook group is for parents and primary caregivers only. After you request to join, please check your Message Requests inbox for a message from one of our Admins. Once you have been approved to join the group, if you feel comfortable, please post an introduction detailing where you’re from and a little bit about your child. If you know the specific location of your child’s genetic variant, please share that as well.

There is also a private GRIN2B Support Group facilitated through Simon’s VIP Connect. Simon’s VIP is a research initiative, supporting families with rare genetic changes (also called “genomic variants”) associated with features of autism and developmental delay.  GRIN2B is one of many genes they are studying.  We encourage you to register your child with Simon’s VIP Connect.  You will be asked to fill out several online surveys and complete several phone calls to collect data on your child and family. All your information is kept private and will go a long way towards assisting researchers who are trying to understand how GRIN2B affects our children. For more information on how to register your family, please visit our Simon’s VIP page.  You do not have to register with Simon’s VIP to be allowed access into the Facebook group.

Helpful TipDid you know you can search a word or phrase within a Facebook group to find if a topic has previously been discussed? If you have a specific question you want to ask, try searching the topic in the search bar on the left side Navigation bar. This will help you easily find old posts about topics you’re interested in. If you can’t find your answer in an old post, then, of course, feel free to pose the question to the group.

Simons VIP Screenshot

Additional Facebook Groups we recommend

All of these are closed groups.* Once you are added, anything you post within the group is private and can only be seen by other members.

Helpful TipThere may already be a Facebook group local to you that supports families of kids with special needs. Try searching your town, city, county, country or area and the words “special needs”, “developmental delays” or “developmental differences”. Or ask all the families, doctors and therapists you know. Sometimes, these groups are secret and cannot be found by searching, and you will need to be added by a member.

GRIN2B FAMILIES

The two closed Facebook groups are a great way to connect. Here are a few other ways to check out the stories of our GRIN2B families.

Facebook pages for GRIN2B children

Websites/Blogs for GRIN2B children

GRIN2B kids in the News

Are you interested in sharing your Facebook page, blog, website or article? Email us at info@grin2b.com.