By Phil Ash, GRIN2B Foundation Board Member
Hello! This is Phil Ash, teacher, father, Board Member of GRIN2B Foundation, and the host of Celebrating Rare: The GRIN2B Podcast. Happy July and Happy Disability Pride Month! This podcast episode in many ways represents a marker for me on a personal journey I began back in 2019. The school where I teach offered a professional development program called Seeking Educational Equity and Diversity or SEED training for short. The SEED program facilitates educators and communities toward personal, organizational, and societal change toward social justice. It especially reveals multiple, systemic forms of discrimination within our society, in the hopes that we will facilitate change so we can all do better for everyone.
What, you may ask, does this have to do with a podcast about rare disease? One of the systemic forms of discrimination covered in SEED is Ableism – the focus of this episode. To the neurotypical persons reading this blog, I ask each of you: when was the last time you thought about the fact that you exist everyday in a world that was made with you in mind? This is not a small thing – especially when you consider that for our disabled loved ones this is not the case. For them, they are discriminated against through limited access to all that our modern world has to offer. This is one form of Ableism that we will cover. 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 your discomfort with the knowledge that you will come out on the other side better for having experienced it and better able to be active allies for your disabled loved ones.
As part of this episode, I am thrilled to welcome Ashley Eisenmenger, a disability inclusion specialist, and disabled triathlete. I reached out to Ashley after coming across her incredible article defining Ableism and examples of Ableism both big and small. She will offer her unique perspectives on Ableism and how she experiences its effects both big and small. I hope you enjoy this episode and reflect upon your own experiences with Ableism. 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.
**WARNING: This podcast contains frank statistics involving physical and sexual abuse of disabled people. Listener discretion is advised.
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.
Hello! This is Phil Ash, teacher, father, Board Member of GRIN2B Foundation, and the host of Celebrating Rare: The GRIN2B Podcast. The COVID-19 Pandemic continued to affect our families and our Foundation in 2021. In spite of its restrictions, we were busy laying the groundwork for three very important initiatives that are all happening in 2022. It only made sense to close out 2021 by reflecting on the year that was, and previewing the exciting things that lay ahead. To that end, I brought on a very special guest for this 
In our Private GRIN2B Parent Support Group on Facebook, a parent recently commented that most GRIN2B Parents have read the blog post I wrote back in 2016 – 
We are working with the team at GRIN Therapeutics to help design this upcoming Clinical Trial and determine the best locations to have trial sites. But to do this, we need to know which patients are classified as Gain of Function. And for that to happen, 
Please, please, pretty please put these at the top of your list (if you haven’t already done them).
Making room for everyone is at the heart of our Foundation. Everyone comes to us at a different place; some have babies who are being diagnosed, and some are finally putting a name to what their adult children have lived with their entire lives. There is no right or wrong way to process the diagnosis or get involved with our community. But, for those who are ready to get involved in whatever way possible, this blog is the resource you are looking for.
