A Rare Reality

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!

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 behavior and finding calm. Take a listen! This podcast might just help you find calm in […]

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!

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 […]

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 […]

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 […]

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!

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!

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!

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 emotional chat that’s sure to leave you feeling inspired!

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, we cover it all! Join us as we kick off a great year […]

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 benefit from this as it’s home to all of the links, info and housekeeping details […]

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? Educating families to know what to ask for sooner. Take a listen today and find out […]

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 child? We talk all about intensive therapy… how it works, what it does […]

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 even more. She has a heart of gold and her willingness to be so very open […]

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.

Did you miss the Family Conference Q and A Zoom Call? Well, now you can catch it here! Get your questions answered – just click the link! For any additional questions, just reach out to:-Jessica. Waxler@childrens.harvard.edu-cbakhos@jordansguardianangels.org-cjanes@jordansguardianangels.org-lfarris@jordansguardianangels.org

Patience, kindness and a willingness to never give up and do anything for her family. Sharon shares with us the ups and downs of years of waiting for a diagnosis for their son, managing a teenager, planning for the future and what her hopes and dreams are for the for their son and all of […]

We so often see our Executive Director Carole Bakhos in an official capacity, now we get to hear from her as Mom. We sit down and have a beautiful, open, uplifting and poignant conversation about her journey as Mom to Yara and so much more. Sometimes your journey takes a right turn and you wouldn’t […]

She’s a gem! You’ve probably heard her before but this time it’s to tell her family story! Michelle Fruhschien is back to talk about diagnosis, dealing with the day to day, intensive therapy (which is doing amazing things for her daughter), life, advocacy, you name it!! She’s 30 minutes of pure sunshine and this pod […]

Another addition of telling our family’s stories and this time it’s a Dad’s voice! Nils Marchand, Dad to Ollie tells us all about his family’s journey with Jordan’s Syndrome. We dive into why he felt the pull to give back to JGA and his messages to all of you as a Dad about this journey […]