Welcome!

Hi! I’m Liz Marfia-Ash, President and Founder of GRIN2B Foundation. The idea for this website came about after my then-18 month old daughter was diagnosed with a GRIN2B variation in 2014, and I was frustrated by the lack of information and resources available to me. You can read more about the origins of this website here.

The original goal of this website was to offer support and share research to the small, but growing community of families whose children have been diagnosed with GRIN2B-Related Neurodevelopmental Disorder. We formed our Board of Directors in the summer of 2017 and, after a lengthy application process, received our 501(c)(3) tax-exempt status by the United States government at the end of that year. Everyone on our Board is parent to a child with a GRIN2B diagnosis, and we are all generously volunteering our time to this cause. If you have any experience in the following areas – medical/science, finance, fundraising, marketing/graphic design, social media management and/or legal – please reach out to us or consider joining our Family Advisory Committee. We are always looking for more volunteers to help us grow. For more on our Foundation’s goals, please read our Mission Statement.

If you are an extended family member or friend of a child who has been diagnosed with GRIN2B, thank you for taking the time to visit our site. Your interest in understanding how our children are affected is much appreciated! Please head on over to our Resources page and take a look at our Recommended Reading for extended families.

If you are a newly diagnosed family, you may be feeling confused and overwhelmed. We recommend you start by reading our Common Questions page first. Keep in mind that everyone processes the diagnosis differently. Some may want to dive into the research, while others may be understandably overwhelmed by all the complex medical terms. It is perfectly acceptable to give yourself a little bit of time to come out of the initial fog of diagnosis before you attempt to read through all the research. Please continue to check this website and our social media pages for updates as the research on GRIN2B is constantly changing and emerging.

We strongly encourage you to register your child in the following three places:

  1. GRIN2B Foundation’s Contact Registry – Completion of this form will add you to GRIN2B Foundation’s database for our newsletters, conference and research announcements and special mailings. This also gives you access to our closed Parent Support Group on Facebook as well as helps us understand the number and geographic breakdown of how many families we serve.
  2. The GRIN Registry – Led by Dr. Tim Benke (University of Colorado), and Dr. Johannes Lemke (University of Leipzig), this registry includes not only GRIN2B patients, but patients from the entire family of GRIN-gene disorders (GRIN1, GRIN2A, GRIN2C, GRIN2D, GRIN3A and GRIN3B). More information about this registry can be found here.
  3. Simons Searchlight – a research initiative studying many different genetic changes, including GRIN2B.

Please contact us if you have any questions or if you know of information that is missing from our website. This site is run by parents and volunteers, and we can only continue to be up-to-date when we all share information.

Don’t forget to follow us on Twitter or Instagram, like us on Facebook and join our private Facebook group (for parents and caregivers only) to connect with other families. The more we can help and support each other, the stronger we all will be as families.

I truly believe it is important for us parents to take action in regards to the development of our children. Since 2014, our private Facebook group has grown from 3 U.S. families to over 500 families from all over the world. I have seen firsthand that no matter how attentive and skilled the doctor is, no one is going to care as much about understanding how GRIN2B affects our children as we parents will. It is our job to stick together and drive the ongoing research so we can come to a better understanding of what our children are facing and how we can best help them. Though each child is impacted slightly differently by their specific GRIN2B change, they are all deeply loved and adorable, and they deserve to be seen as more than just “puzzles” or “mysteries.” Let’s work together to help unravel their mysteries and change the narratives surrounding our kids.

Hello, I’m Brittaney Crider. As Family Outreach Coordinator I make it my mission to keep families in touch with the resources they need. Finding the GRIN2B community has been life-changing for my family and my daughter, Natalie, who received her diagnosis in 2016.

I strongly believe one of the best resources for a GRIN2B family are other GRIN2B families that really “get it”. Families can easily connect via our private Facebook support group for parents and guardians. Once the Family Registry has been filled out, I can approve your request to join our group. If Facebook isn’t the ideal way for you to communicate with other families, I can help get you in touch with families through exchanging emails, or even find other families that live in your region. 

I would also love to help you apply for GRIN2B Foundation Grants and other opportunities that arise for our GRIN2B community. We currently offer a Patient Assistance Grant that is only open to the GRIN2B community and travel stipends to our GRIN2B Family Weekends.