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Hello! This is Phil Ash, teacher, father, board member of the GRIN2B Foundation, and the host of Celebrating Rare: The GRIN2B Podcast. I thought this would be a small way I could contribute to the cause of our non-profit organization. I am a radio and television teacher, and using media to connect and inform GRIN2B families sounded like a good idea. I hope you enjoy the listen, and understand that we will get better as we go along. Our podcasts features commentary, updates on research and a ...
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Episode 8: Celebrating Rare: The GRIN2B Podcast Episode 8 - Defining and Combating Ableism
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The goal of this episode is to define ableism, name it in its various forms and reflect upon the times when we have all perpetuated ableism both in society at large and within the rare disease space. I promise my listeners that this episode will be very informative and probably uncomfortable at times to hear. But I encourage you all to lean into yo…
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Episode 8: Celebrating Rare - The GRIN2B Podcast Episode 7 - Looking Forward to 2022 with Liz Marfia-Ash
57:30
Celebrating Rare - The GRIN2B Podcast closes out 2021 by welcoming GRIN2B Foundation President and founder Liz Marfia-Ash. Liz reflects on the year that was while also previewing three exciting initiatives GRIN2B Foundation is taking on in 2022, including a potential clinical trial for patients with gain of function GRIN2B variants, the opening of …
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Hello! In this episode of Celebrating Rare, host Phil Ash helps newly diagnosed parents of children with GRIN2B-Related Neurodevelopmental Disorder understand the basics of genetics. This will help parents interpret their child's genetic report in order to create a plan forward both medically and holistically. PODCAST Disclaimer: While I make every…
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Hello! In this episode of Celebrating Rare, host Phil Ash interviews GRIN2B Foundation Science Director Dr. Samuel Kown about his in-depth research into and personal connection with GRIN2B-Related Neurodevelopmental Disorder. PODCAST Disclaimer: While I make every effort to broadcast correct information, I am still learning. I make every effort to …
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Hello! In this episode of Celebrating Rare, host Phil Ash interviews GRIN2B Foundation Grant Recipient Dr. Caitlin Hudac about her exciting, upcoming work with GRIN2B-Related Neurodevelopmental Disorder. PODCAST Disclaimer: While I make every effort to broadcast correct information, I am still learning. I make every effort to double check my facts,…
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The second part of episode 3 continues our discussion with GRIN2B parents Brittaney and Mike Crider as they discuss how they discovered and created their new normal of living a life with their daughter Natalie and her GRIN2B variation. PODCAST Disclaimer: While I make every effort to broadcast correct information, I am still learning. I make every …
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Celebrating Rare: The GRIN2B Podcast Episode 3, Part 1: Brittaney and Mike's Journey with Natalie and her GRIN2B Diagnosis
35:26
In part 1 of episode 3, Celebrating Rare is joined by parents Brittaney and Mike. They discuss their daughter Natalie's journey with GRIN2B and reflect on how living with a rare genetic disorder has changed them as parents and as people. PODCAST Disclaimer: While I make every effort to broadcast correct information, I am still learning. I make ever…
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In this episode of Celebrating Rare, the GRIN2B Podcast, host Phil Ash shares his personal reflections on the GRIN2B Foundation Family Conference, which took place on September 22, 2018 in Atlanta Georgia. PODCAST Disclaimer: While I make every effort to broadcast correct information, I am still learning. I make every effort to double check my fact…
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In its inaugural episode, Celebrating Rare discusses the goals of the GRIN2B podcast and defines the rare genetic disorder that is GRIN2B. Host Phil Ash then discusses his daughter, Lucy and his family's journey to receiving her diagnosis. Finally, Phil discusses several treatment options for persons with GRIN2B. PODCAST Disclaimer: While I make ev…
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