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Month: March 2020

Celebrating Rare: The GRIN2B Podcast, Episode 5

By Phil Ash, GRIN2B Foundation Board Member

Dr. Samuel Kwon, GRIN2B Foundation Science Director

Hello! This is Phil Ash, teacher, father, Board Member of GRIN2B Foundation, and the host of Celebrating Rare: The GRIN2B Podcast. In this episode, we continue to celebrate GRIN Awareness Month and GRIN2B Awareness Week 2020 by having an in-depth conversation with GRIN2B Foundation’s Science Director, Dr. Samuel Kwon. Dr. Kwon joins the podcast to discuss how he came to learn about GRIN2B both as a researcher and as a connected family member. Dr. Kwon is the head of The Kwon Lab at the University of Michigan, where he is currently studying mouse models with GRIN2B variants in order to understand how variations in GRIN2B impact the neural circuit for motor function. Not sure what that means? Neither was I! Check out the podcast to hear Sam break down his research and to offer his opinions on what aspects of GRIN2B-Related Neurodevelopmental Disorder should be researched and studied. 

I hope you enjoy this episode, and be on the lookout for future episodes this year featuring additional parents, researchers and doctors. As always, if you have comments or suggestions for future topics, or are interested in being a guest on future episodes, please send an email to phil.ash@grin2b.com or send a tweet to @grin2bsyndrome, using the hashtag, #CelebratingRare.

To further protect myself from any unintended mistakes, each episode will have the following written disclaimer when you click on the link:

PODCAST Disclaimer: While I make every effort to broadcast correct information, I am still learning. I make every effort to double check my facts, but realize that medicine is a constantly changing science and art. I am simply sharing my views and personal experiences as a GRIN2B parent. I am not a medical professional. I welcome any comments, suggestions, or correction of errors. This entire disclaimer also applies to any guests or contributors to the podcast. Under no circumstances shall Phillip Ash, GRIN2B Foundation, any guests or contributors to the podcast, or any employees, associates, or affiliates of GRIN2B Foundation be responsible for damages arising from use of the podcast.

We Can Do Hard Things (COVID-19 Resource Round-Up)

By Liz Marfia-Ash, GRIN2B Foundation Board President

Dear GRIN2B Community,

We recognize that due to the worldwide COVID-19 pandemic, this is a very uncertain and fearful time for everyone. We are concerned for our community’s safety, well-being and mental health, and we implore everyone to take part in preventative measures to help spread out cases and flatten the curve. We know that many of our families are facing long weeks ahead at home with their children. Change in normal routines can be very difficult on our children impacted by a GRIN2B diagnosis. We have put together the following list of resources to help get you through the coming weeks. We will continue to update this blog post as we learn of additional resources.

Over the coming weeks, we will be working to provide additional resources to help our families. Please reach out to us with any suggestions. Social distancing is hard, but we can do hard things.

Bee strong, bee kind, bee calm and please enjoy celebrating GRIN2B Awareness with us this week.

All our best,

Liz Marfia-Ash, on behalf of the GRIN2B Foundation Board of Directors


Helpful Resources to get us all through the COVID-19 Pandemic:

*Updated with new resources as of 3/20/20

To stay updated on the latest information about the Coronavirus outbreak, we recommend the following websites, as well as your state or country’s health department or national health authority websites.

Educational Resources for Children

Science & Animals

Art

Reading

Activities and Worksheets

Resources for AAC Users

Resources for Autism Families

Not educational, but here are some cool things to do while stuck at home

Resources to Calm You or your child’s Anxiety

Recipes (*Please send us more ideas for this list!)

Music to help keep your spirits up

Please let us know of additional resources we are missing!

#beekind #beestrong #beecalm