A Rare Reality

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 […]

This season we are dedicated to telling our family's stories. On this episode we sit down with Ashley Lightaul, Mom to Ivy who lives with Jordan's Syndrome. Ashley is so refreshing, so honest and so optimistic with a whole lot of realistic blended in too. Don't miss our convo!

Join us as we talk all about the latest updates as we get closer to our Family Conference in Boston in July! We have new details on travel, our schedule and more plus an in depth look at research information gathering with Jessica Waxler from Boston Children's Hospital. A must listen for all conference attendees! […]

From telling family stories to sharing their journey with Jordan's Syndrome and talking fundraisers, we sit down with two JGA Moms who are breaking barriers and fundraising for our cause. Plus, what they are most looking forward to this Summer and a message for all of our JGA families! Tune in today!!

Stop what you're doing and listen to this podcast. It's truly a MUST listen if you're raising a child with a disability. Kelley Coleman's book is a one stop shop for everything you need to know. It's approachable, interesting, fun and something you'll revisit time and time again. DO NOT MISS THIS PODCAST! Read Kelley's […]

Tune in for a sneak peek at all of the big plans ahead for this year's family conference in Boston! Click here to register.

Our final podcast of the season! Our JGA Team sits down to discuss all that we are thankful for. Don't miss it! Plus, we will post it to our Facebook page, so please comment and let us know what you are thankful for too!

Have you met our Ambassadors? We sit down with several of them to discuss what their experience has been like, what they've enjoyed most about being an Ambassador at JGA, why you should get involved and more! And in the spirit of the season, we talk all about what all of us are thankful for. […]

Hear the latest about all things JGA – research, fundraising and the upcoming family conference!

THIS WILL CHANGE YOUR DAY. We sat down with Dr. Carla Friedli, PHD to talk about helping to navigate life's journeys. We talk self care but not just any self care, self compassion and self kindness. We talk the grief and stress response and why it's harmful, and we give you some simple, tangible takeaways […]

Did you know our own Lexi Levine helped to co-author a new Standard of Care Guideline publication with Dr. Wendy Chung? We sit down with Executive Director Carole Bakhos to discuss what's in the publication, how it's helpful, why you need it, and why it means so much to Lexi. Don't miss it! Read the […]

In this episode of "A Rare Reality," hear the latest incredible developments in our research efforts, with JGA lead medical investigator Dr. Wendy Chung, and our Executive Director Carole Bakhos.

August is all about stories of hope! For this episode we sit down with Matt Schwartz, one of our very own, a Dad, who has been newly diagnosed with Jordan's Syndrome. We hear from him about his recent diagnosis, how he feels about our community and the research, living with Jordan's Syndrome, and his message […]

In this special edition of A Rare Reality, we're taking a look back at some of our favorite stories of hope!

We loved it so much we are going to do it again! It's Simple Luxuries Part 2, this time with some of our JGA Moms! What the one simple thing that brings you joy? It can be anything at all, and you might be surprised at what you hear!

This week, we are talking all about the simple luxuries in life. Whether it's a cold soda with ice, a quiet walk or a good book, what are the simple things that bring you joy? Take a listen and then chime in on social media to share yours with us!

Just three Moms talking about hard things. Different perspectives, different scenarios but all just trying to survive and thrive and do what's best for our kids and our families. Can you relate?

We sit down with Randee Halvorsen, Mom to Jessica, an (almost) 26 year old living with Jordan's Syndrome. We talk about what their life has been like, a late diagnosis, navigating puberty and hormones, shifting from a parent advocate to a patient advocate, tremors, special needs trusts and planning for the future and so much […]

Support Month at JGA brings in our good friends at Extra Lucky Moms. They are an incredible support for the entire special needs community and have recently launched a new book that you must hear all about! Plus, our very own Michelle Fruhschien (who authored part of the book) stops by to talk about the […]

Jordan's Guardian Angels Executive Director Carole Bakhos joins us to talk all about support! Are you new to JGA and want to know how we support you? Or have you been here a while and just don't know all the ways we are here for you? Take a listen and see how JGA can touch […]

Effie Parks from Once Upon a Gene is Here!!! Check out Effie's website here: https://effieparks.com