25 episodes
A Rare Reality Jordan's Guardian Angels
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- Society & Culture
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5.0 • 6 Ratings
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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 groundbreaking research into Jordan’s Syndrome that could one day change the world. We want to uplift, advocate, motivate and inform.
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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 […]
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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!
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A Rare Reality, Season 4, Episode 4 – Everything You Need To Know About Family Conference, Part 2: Boston Children’s Hospital Edition
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! […]
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A Rare Reality, Season 4, Episode 3 – Fundraising, Families & Fun
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!!
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A Rare Reality, Season 4, Episode 2 – Everything No One Tells You About Parenting a Disabled Child – Your Guide to the Essential Systems, Services, and Supports
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 […]
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A Rare Reality, Season 4, Episode 1 – Everything You Needed to Know About the Family Conference (July 2024)
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.