25 episodes

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 Jordan's Guardian Angels

    • Society & Culture
    • 5.0 • 6 Ratings

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 4, Episode 10: Family Conference Q & A

    A Rare Reality – Season 4, Episode 10: Family Conference Q & A

    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

    • 43 min
    A Rare Reality – Season 4, Episode 9: JGA Family Stories - A Conversation with Sharon Elliott

    A Rare Reality – Season 4, Episode 9: JGA Family Stories - A Conversation with Sharon Elliott

    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 […]

    • 43 min
    A Rare Reality – Season 4, Episode 8: JGA Family Stories - A Conversation with Carole Bakhos

    A Rare Reality – Season 4, Episode 8: JGA Family Stories - A Conversation with Carole Bakhos

    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 […]

    • 52 min
    A Rare Reality – Season 4, Episode 7: JGA Family Stories, Michelle Fruhschien

    A Rare Reality – Season 4, Episode 7: JGA Family Stories, Michelle Fruhschien

    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 […]

    • 23 min
    A Rare Reality, Season 4, Episode 6 – JGA Family Stories: Nils Marchand

    A Rare Reality, Season 4, Episode 6 – JGA Family Stories: Nils Marchand

    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 […]

    • 34 min
    A Rare Reality, Season 4, Episode 5 – JGA Family Stories: Ashley Lightaul

    A Rare Reality, Season 4, Episode 5 – JGA Family Stories: Ashley Lightaul

    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!

    • 33 min

Customer Reviews

5.0 out of 5
6 Ratings

6 Ratings

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