Hosted by Jordan's Guardian Angels · EN · 25 episodes
Established thought leaders with verified media credentials.
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.
Jordan's Guardian Angels hosts A Rare Reality, a society show with 25 episodes published.
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 t
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!
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
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 o
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 y
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 wa
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
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 t
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
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 t
It’s a recap of a HUGE week in Washington, DC…Rare Disease Week! Our own Lexi Levine attended for JGA and gives us a full recap, what it is, what it does, new news on BIG headlines and how you can help too!
From being a Mom to a teenager living with Jordan’s Syndrome, to being an Ambassador, to finding hope in the little things and why it’s so important to get involved, this conversation covered it all. Don’t miss our emoti
Welcome to 2025 and Season 5 of A Rare Reality! We kick off the year with a look ahead at all of the things we are so looking forward to….from Clinical Trials, to fundraising, to ways to connect, this podcast and more, w
We are SO grateful! Join us as your JGA Team gathers together to reflect on the year and all that we are grateful for. It’s our final podcast of the year and our FAVORITE podcast of the year!!
Attention NEW Families, this one is for you! (And everyone else too!) We have launched our NEW new families packet, a one stop shop for our new families as you begin your journey with JGA. Our existing families also will
Advocacy advocacy advocacy! Take a listen as we debut our new initiative aimed at finding answers faster. How do we get to a diagnosis more quickly? How can you find answers you are looking for? How can YOU help? Educati
We heard what they were doing and the success they were having with one of our own JGA kids and we had to tell you all about it! Meet Rise Pediatric Intensive Therapy! So what is intensive therapy? Would it benefit your
Honesty, vulnerability, hope, love…you’ll get it all in this podcast with the wonderful Lucy Cooper! She poured her heart out and gave us one of the best moments at our Family Conference and now she’s back to tell us eve
Listen as JGA parents answer your questions, give advice and provide insight regarding having a child with Jordan’s Syndrome. A must listen!
In a milestone moment in our journey, listen as Dr. Wendy Chung announces human clinical trials at the JGA Family Conference in Boston, in July 2024.
Lisa McCarty
JGA
2 appearances on this show
Dana Garrett
author, digital creator · Rare Blooms Foundation
1 appearance on this show
Rev Karla
Rev · Ginger Soul
1 appearance on this show
Sandy
Master IEP Coach® · Mental Edge Hockey
1 appearance on this show
Priscilla
founder · FirstGen Healing Community
1 appearance on this show
Lucy Cooper
Project Lead for Refill · Crescent Capital Partners
1 appearance on this show
Dr. Wendy Chung
clinical and molecular geneticist, Chief of Pediatrics at Boston Children's Hospital, Mary Ellen Avery Professor at Harvard Medical School · Boston Children’s Hospital
1 appearance on this show
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A Rare Reality is hosted by Jordan's Guardian Angels. The show is categorised under society (culture) and has published 25 episodes.
A Rare Reality has published 25 episodes.
A Rare Reality regularly covers society, culture, personal. It sits in the society category, with a culture focus.
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Episodes of A Rare Reality average 29 minutes. a focused format where a clear narrative arc and tight preparation matter most.
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