WELCOME 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 public Facebook page and also join the closed 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, you will be asked a series of questions to confirm that you are the parent or caregiver of a person with a GRIN2B variation. You may receive a message from one of our Admins if we need additional information before we add you to the group. Once you have been approved, if you feel comfortable, please post an introduction detailing where you’re from and a little bit about your child.
There is also a private GRIN2B Support Group facilitated through Simons Searchlight (formerly known as Simons VIP Connect). Simons Searchlight 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. This Facebook group is no longer as active as it once was, but we encourage you to register your child with Simons Searchlight. 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 Simons Searchlight page. You do not have to register with Simons Searchlight to be allowed access into their Facebook group.
Did 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.
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.
- Hypotonia Parent’s Connection – Connect with over 3000 parents worldwide whose children have hypotonia. *This has become a Secret Group. If you would like to be added, please send us an email.
- A Very Special Needs Christmas – Provides gift ideas for children with special needs.
- AAC – Alternative Awesome Communicators – Provides support to families with children using communication devices.
- Special Needs Swap Meet – A place to list any items you want to sell, give away or swap that can be of use to kids with special needs.
- Föräldraföreningen Anonymous – A Facebook group for our Swedish families.
There 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 disabilities”. 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
- www.vd-ven.eu
- https://christinadyck.wordpress.com/2013/12/11/leightons-sort-of-diagnosis/
- http://heltunik.blogspot.no/
- http://ourlifewithalex.blogspot.com/2016/05/hospital-update.html
GRIN2B kids in the News
- Why I’m so ‘Into’ My Child’s Medical Condition
- Parents of Child with rare genetic disorder keep eye on state of health care
- Local Mom starts Bee Happy Day to raise awareness
- To the Person Who Just Googled GRIN2B for the First Time
- Two Young Carers Play Vital Role in Helping Family Cope (PDF)
- Two of a Kind – from Pick Me Up! Magazine (PDF)
- Arian’s article (PDF) We do not have an English translation of this.
Are you interested in sharing your Facebook page, blog, website or article? Email us at info@grin2b.com.