A Rare Reality
A Rare Reality
Jordan's Guardian Angels
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.
A Rare Reality – Season 5, Episode 13: 2025 Thankful Podcast!
It’s our favorite podcast of the year when the JGA Team gets together and reflects on how much we are all thankful for! A must listen and don’t forget to chime in with what you are thankful for too!! Happy Thanksgiving to all of you!
Nov 27, 2025
10 min
A Rare Reality – Season 5, Episode 12: Human Clinical Trial Update
Carole Bakhos joins us for an update on where we stand with the clinical trial. There are a few spots open now so take a listen to see if you are eligible to get involved. A must listen for all of our families!
Sep 8, 2025
13 min
A Rare Reality – Season 5, Episode 11: Parent Power – Tips and Tricks to Help You Thrive
This episode we sit down with Lisa McCarty and we are talking all things BEHAVIOR! We deep dive into how she has used her years of teaching experience to help support here son, decreasing the frequency of self injurious behavior and finding calm. Take a listen! This podcast might just help you find calm in […]
Jul 20, 2025
36 min
A Rare Reality – Season 5, Episode 10: JGA Family Stories, A Conversation with Lisa McCarty
She’s one of our “OG” Moms here at JGA, having been here since the beginning. Now, hear from Lisa McCarty as she recounts their journey with Jordan’s Syndrome, hopes for the future, clinical trials, and her message for our new families as well. Don’t let this one pass you by, it’s a great listen!
Jul 7, 2025
28 min
A Rare Reality – Season 5, Episode 9: JGA Family Stories, A Conversation with Leslie Batuyong
Tune in as we meet one of our newer JGA families, Leslie and her son Rohan! We walk through their journey with them from the very beginning to now, their hopes for the future and our clinical trial and so much more. 13 years of dedication and devotion to her son, a story of love […]
Jun 16, 2025
31 min
A Rare Reality – Season 5, Episode 8: A Conversation with Author Dana Garrett
This week we welcome Author and Rare Mom Dana Garrett! She wrote the sweetest book called ‘Alana and Wyatt’s Adventures - The Rare Gator Rescue’. It’s an incredible story full of inclusion and recognition and you will want to hit BUY NOW as soon as you hear all about it. Don’t miss this one, we […]
Jun 2, 2025
21 min
A Rare Reality – Season 5, Episode 7: Clinical Trial Update!
We are joined by Carole Bakhos and Candice Huber this week to talk all things human clinical trials! Candice’s family is our first to go through the clinical trial process. We talk all about her experience, what tips you need to know and what’s next for all of you. Don’t miss out on this crucial […]
May 19, 2025
39 min
A Rare Reality – Season 5, Episode 6: JGA Family Stories – A Conversation with Priscilla Campos
From start to finish this heartfelt podcast will pull at your heartstrings and give you chills. It’s a true testament to parents never giving up on their child and fighting through some pretty terrifying moments to get to today. Don’t miss it!
Apr 21, 2025
44 min
A Rare Reality – Season 5, Episode 5: JGA Family Stories – A Conversation with Kelly Zecchini
One of our own JGA Moms joins us for a chat about life with a teenager living with Jordan’s Syndrome. We talk all about her sweet boy and what she leans on to get her through the tough spots – a conversation you will not want to miss!
Apr 8, 2025
22 min
A Rare Reality  – Season 5, Episode 4: Carnival For a Cause
We check in with our awesome JGA Ambassadors Sandy, Priscilla and Karla… how they are going for it and putting on a big fundraiser together, why they are SO excited and how you can help them. Plus, some tricks and tips to not getting overwhelmed!
Mar 24, 2025
24 min
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