Join us July 19th – 23rd, 2021 for our GRIN2Bee Hive Webinar Week!
In place of our cancelled GRIN2B Family Weekend this July, we are instead producing a webinar series to engage, educate and empower our community.
For your convenience, the majority of the webinars will be pre-recorded and made available on our YouTube channel starting July 19th. We will have two live webinars in the evening on 7/20 and 7/22. See the descriptions below for more details!
We hope you’ll join our beehive that week!
PRE-RECORDED WEBINARS
*The following webinars are available to watch on our YouTube page.
Meet the GRIN2B Foundation Board
Each of our Board Members will introduce themselves and talk about a different aspect of our mission and programs.
Read our Board bios here.
Introduction to AAC
Learn the basics of Alternative Augmentative Communication with Speech-Language Pathologist, Heid L. Rabe.
Heidi L. Rabe, M.A., CCC-SLP/L is a Speech-Language Pathologist with over 20 years of experience working with children and adults with a variety of complex communication challenges and specializes in AAC. Heidi has presented nationally and internationally on topics related to AAC and has worked in a variety of private and educational settings. She started Authentic Expression, LLC in 2016 and currently provides individual therapy to clients, Assistive Technology Coaching to school districts in the Chicagoland area, and coaching to other SLPs around the U.S. Heidi is a member of ASHA special interest divisions 12 and 18, many online communities on social media, including being the administrator for IL AAC group on Facebook, and a co-founder of the IL AAC Community Center.
Research Corner with GRIN2B Foundation Grantees:
- Research Corner, Part 1 with Dr. Caitlin Hudac
Dr. Hudac will provide updates on her 2019 Grant – Linking Brain and Behavior: A GRIN2B Biomarker. Note – this grant is for an in-person study which has been delayed due to Covid-19 restrictions.
- Research Corner, Part 2 with Dr. Tim Benke
Dr. Benke will provide updates on the GRIN Variant Patient Registry.
- Research Corner Part 3 with Dr. Hongjie Yuan
Dr. Yuan will provide updates on his 2020 Grant – Rescue Pharmacology and Therapeutic Strategies to Treat Pediatric Neurological Disorders Associated with a Loss-of-Function GRIN2B Variant.
You can read about the above Research projects here.
Genetics 101
Rebecca Smith, MS, CGC
Licensed, Certified Genetic Counselor and Research Coordinator
Autism & Developmental Medicine Institute, Geisinger
During this talk, Simons Searchlight genetic counselor Rebecca Smith will review several genetics concepts including DNA and genes, types of genetic mutations in GRIN2B, and tips on how to read and make sense of a genetics lab report. The goal of this talk is to help in the understanding of your family member’s genetic testing result.
LIVE WEBINARS
Register for the Zoom link and/or watch live on the GRIN2B Foundation Facebook page.
*These webinars will be added to our YouTube page at a later date.
Simons Searchlight Registry Update & iPSCs
7/20 at 6 pm Central / 7 pm Eastern – Register here
Principal Investigator, Simons Searchlight
Director of Clinical Research, SFARI, Simons Foundation
During this talk, principal investigator Wendy Chung will present an update on the Simons Searchlight GRIN2B research registry, including a summary of the medical, behavioral, and developmental data. In addition to a registry update, she will discuss the importance of iPSCs (Induced Pluripotent Stem Cells) and how Simons Searchlight uses blood sample donations from participants to create iPSCs and distribute them to interested researchers. This talk aims to highlight the value of research participation for you and your family.
GRIN2B Parent Panel – “It Gets Better”
7/22 at 6 pm Central / 7 pm Eastern – This webinar will be streamed live to our Facebook page.
Featuring a discussion with GRIN2B Parents, Liz Marfia-Ash, Jeff Johnson, Donna Hayes and Nicole Horton. Liz will guide the group through a discussion about the journey from shocking diagnosis for their GRIN2B children to where they are today.
Parent Bios:
Liz Marfia-Ash is the President and Founder of GRIN2B Foundation. She lives in the Chicago suburbs with her husband and three children – Zach (11), Lucy (8, with GRIN2B) and Alex (4). Understanding full well how lonely and overwhelming it is for families to deal with such a rare diagnosis, Liz is determined to be a voice of positivity in the GRIN2B community. She is very passionate about supporting both the well-being of families and working with the medical community to better understand and treat GRIN2B. Liz also serves on the board for Combined Brain and on the Simons Searchlight Community Advisory Committee. In addition to her duties as President, Liz works as a Project Manager for a small marketing firm in Chicago. She loves writing, and has written several blogs for both The Mighty and for the GRIN2B Foundation blog. She is currently writing her first Children’s book.
Jeff Johnson is a GRIN2B parent from Decatur (Atlanta), Georgia. He is married to Charlotte Johnson and has 3 beautiful children — Ansley (10 going on 14), Nolan (9, GRIN2B), and Sophie (newborn). Jeff works for the FAA as an aircraft structures engineer and enjoys getting out in the world, SCUBA diving, golf, live music and grilling. The GRIN2B community is an extremely valuable part of his family because of practical idea sharing, friendships made, and educational opportunities. The GRIN2B community also played a big role in giving us the confidence to have our third child we always dreamed of.
Donna Hayes lives in Richmond, Virginia with her husband AJ and is the mother of 16-year-old Zachary and 19-year- old Alexandra, diagnosed with Grin2B, Lennox Gastaut & Cerebral Palsy. Alexandra is non-mobile, non-verbal and g-tube dependent. Donna graduated from business school in New York City and has over 25 years of business experience in the HR field. Donna currently serves on 2 non-profit Boards: Nest Academy RVA, which she helped form, whose mission is to create and promote inspirational learning environments for young adults with complex disabilities. She also serves on the We Heart Harlie and Friends Foundation Board whose mission is to offset the financial strain of medically fragile children as their Family Liaison. Donna has served on other non-profit Boards benefiting people with disabilities as she has a personal passion for serving the special needs community.
Nicole Horton is from Union, NJ and is the mother of 2 children – Amil, who is 20 years old, and Aiden, who is 10. Aiden was diagnosed with GRIN2B at the age of 6. She’s a member of several different organizations, including American Disabilities Association(ADA) for the township of Union and the Family Advisory Council for Children’s Specialized Hospital. She is also approaching completion of her BA in Applied Behavioral Sciences and plans to work within the disability community as a support coordinator for families. The GRIN2B community means so much to Nicole and her family because for the first six years Aiden’s diagnosis was questionable and to finally have an answer has brought much-needed relief. We see now that we are NOT ALONE and we have gained such an amazing level of support amongst our GRIN2B family!