A Rare Reality: the JGA Podcast

We are living ‘A Rare Reality’ and we want to tell you all about it!

Join Jordan’s Guardian Angels as we cover dozens of topics in the rare disease space and give you a closer look at our groundbreaking research into Jordan’s Syndrome that could one day change the world. We want to uplift, advocate, motivate and inform.

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Watch the video versions of our podcast episodes below!

Episode Eight: New Family Guide

November 20, 2021

So you've been diagnosed with Jordan's Syndrome. Now what? This is a step by step guide to getting the most out of Jordan's Guardian Angels.

This podcast is specifically geared toward our newly diagnosed families. We are here for you.

Additional Resources: 

Jordan's Guardian Angels Resource Center

Jordan's Syndrome Family Database

Joining the Research through Simons Search Light

 

Episode Seven: A Rare Reflection

November 13, 2021

This time, it's Yara's Dad's turn. We talk about the little girl who makes every room brighter, and how there's a memory that won't leave her Dad's brain: how she chose to reveal her love in her own way and the message for families waiting to make that same connection with their child.

Tune in for a heartfelt story you won't want to miss.

Episode Six: Bringing Speech & Language to Life

November 1, 2021

Bringing Speech and Language to Life with Creative and Alternative Therapies….. Whether your child is verbal, non-verbal, communicating in their own special way, beginning to talk or chatting up a storm this episode is for you.

We sit down with Speech and Language Pathologist Cathy Lauderbaugh (M.A., CCC-SLP) to discuss alternative communication strategies, for all levels, and the research supporting the strategies. Learn how to engage your child's community to help bring out the best in your child and so much more, from how to best support your child at school, at home and everywhere in between, to feeding therapy, hippotherapy and a message to families feeling overwhelmed. A Rare Reality you won't want to miss. 

Additional Resources:

www.creativestrategiestherapy.com

www.dynamictherapyservices.org

Grasshopper Feeding Therapy Information: Credit to Marsha Dunn Klein (featured in Krisi Brackett’s feeding blog): http://pediatricfeedingnews.com/grasshoppers/

 

Episode Five: You Are Not Alone

October 18, 2021

In the rare disease space, finding experts who know about your child's condition can be just as rare. So, we the parents step up, becoming the medical experts, the therapists, the teachers, and we hold the answers. But you are not alone!

We sit down with JGA Project Director Carole Bakhos to talk about becoming an expert for her daughter Yara, the struggles, the wins, and how not to give up when the stakes are high. A special series you won't want to miss!

Episode Four: Journey to a Cure

September 27, 2021

Join your JGA Team Members as we cover what it takes to build a foundation and sustain it from the ground up.

From forming your teams, to starting a registry and natural history study, to social media, engagement, fundraising and more, we cover what it's like to start from scratch. If you're in the rare disease world and wondering how to start, what to do next and what to know, or if you're feeling overwhelmed, you're not alone...or if you just want to hear our story, this podcast is for you!

Episode Three: A Rare Reflection

September 15, 2021

We’ve all had those moments with our children that are burned into our memories forever.

On this episode we sit down with MamaBearForRare Michelle Fruhschien to talk about her daughter, life with rare disease, the memory she won't ever forget and her message for families dealing with rare disease.

Episode Two: You Are Not Alone – Acceptance

August 10, 2021

When you're a rare family it's easy to feel like you're on an island, but far from it…. You Are Not Alone.

Join us as we sit down with Jordan’s Guardian Angels Project Director Carole Bakhos to talk about acceptance, and how being different is ok! A special series you won't want to miss.

Episode One: Living with Jordan's Syndrome

August 2, 2021

Welcome to our first ever podcast! In this episode we sit down with our lead researcher, the brilliant Dr. Wendy Chung to explain what Jordan’s Syndrome is, what it does to those diagnosed, what is ahead as we get closer to a treatment or a cure and more.

Then we sit down with a few of our Jordan’s Guardian Angels moms, including Co-Founder Cynthia Lang to get to the heart of it. What’s it like to get this diagnosis, how does this foundation give you hope, how relationships are everything, and a message to all the families out there dealing with Jordan’s Syndrome and rare disease.