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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 groundbreaki... more
FAQs about A Rare Reality:How many episodes does A Rare Reality have?The podcast currently has 31 episodes available.
July 20, 2025A Rare Reality – Season 5, Episode 11: Parent Power – Tips and Tricks to Help You ThriveThis 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 […]...more37minPlay
July 07, 2025A Rare Reality – Season 5, Episode 10: JGA Family Stories, A Conversation with Lisa McCartyShe’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!...more29minPlay
June 16, 2025A Rare Reality – Season 5, Episode 9: JGA Family Stories, A Conversation with Leslie BatuyongTune 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 […]...more32minPlay
June 02, 2025A Rare Reality – Season 5, Episode 8: A Conversation with Author Dana GarrettThis 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 […]...more22minPlay
May 19, 2025A 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 […]...more40minPlay
April 21, 2025A Rare Reality – Season 5, Episode 6: JGA Family Stories – A Conversation with Priscilla CamposFrom 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!...more45minPlay
April 08, 2025A Rare Reality – Season 5, Episode 5: JGA Family Stories – A Conversation with Kelly ZecchiniOne 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!...more23minPlay
March 24, 2025A Rare Reality – Season 5, Episode 4: Carnival For a CauseWe 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!...more25minPlay
March 10, 2025A Rare Reality – Season 5, Episode 3: Rare Disease Week RecapIt’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!...more25minPlay
February 24, 2025A Rare Reality – Season 5, Episode 2: JGA Family Stories – A Conversation with Karolina WarsztonFrom 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 emotional chat that’s sure to leave you feeling inspired!...more39minPlay
FAQs about A Rare Reality:How many episodes does A Rare Reality have?The podcast currently has 31 episodes available.