A Rare Reality: the JGA Podcast

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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Watch the video versions of our podcast episodes below!

Season Two

Episode Sixteen: The Story of Frank

July 29, 2022

Nancy Chirlo sits down with us to tell the story of her beloved brother’s life. Frank remains the oldest known person with Jordan’s Syndrome and after his passing donated his brain to science to continue the research efforts.

Nancy has a heart of gold, the most loving sister and this is a beautiful, difficult, wonderful conversation that many of you will truly benefit from hearing.

 

Episode Fifteen: Canine Companions

July 15, 2022

Does your family need a calming presence with 4 legs and a wagging tail?

Now is your chance to hear all about Canine Companions: from what it takes to bring a dog home, to parent involvement, cost, and why having a Canine Companion could be the best thing for your family. 

Additional Resources:

-Click here to learn more

Episode Fourteen: JGA Conference Update #3

July 1, 2022

Tune in for the latest updates on the upcoming JGA Family Conference in New York City, now just days away!

Additional Resources:

-Click here for Conference Registration

-Click here for Virtual Registration

Episode Thirteen: Meet Your JGA Ambassadors

June 17, 2022

Help us to welcome our JGA Ambassadors!

As we introduce our team of volunteers, find out who they are, and what they will do! We walk you through what the program is and how it truly will elevate the support our familes around the world need.

Additional Resources:

For more information, email connect@jordansguardianangels.org.

Episode Twelve: Sibling Series, Part Two

June 3, 2022

This episode is directed specifially for the adults, the parents, the caretakers. Join us as we chat with our own Lexi Levine about her own personal experiences with the family dynamics of having a sibling with special needs.

We are joined by Emily Holl with Sibling Support Project. Emily provides key resources for parents, everything from planning for the future, special needs trusts, how to have the hard conversations, balancing it all from time with other children to time alone, self care, plus a list of places to use as a resource guide as you navigate your journey. This is a must listen!

Additional Resources:

-Sibling Support Project

-Sibling Leadership Network

-ARC Center for Future Planning

Episode Eleven: Sibling Series, Part One

May 20, 2022

This episode is directed specifically for the siblings. Join us as we chat with our own Lexi Levine as she gets set to host our Sibling Workshops at the JGA Family Conference. Emily Holl with Sibling Support Project joins us and lends some beautiful insight.

We cover big feelings, how to talk about your experience as a sibling of someone with special needs, why talking with others experiencing something similar is so important and much more. This is an incredible resource for our families!

Additional Resources:

-Sibling Support Project

-Sibling Leadership Network

-ARC Center for Future Planning

 

Episode Ten: Family Conference Update #2

May 6, 2022

This is another must click for our families attending the upcoming 2022 JGA Family Conference in person.

We cover everything from hotel stays and lanugage accessibility, to the agenda, the components of the research being conducted on site, childcare during the conference, sight seeing, interviews and so much more.

Please take a moment and take a listen... it is very important!

Additional Resources:

-Dance Party Song List

-Simons Searchlight

Episode Nine: The Sky is the Limit for Lexi

April 22, 2022

There are some people who just make the world a little brighter and Lexi Levine is one of them.

Join us as we talk about her precious brother, Barry, how she's turned her grief into purpose, her latest major recognition, what it's like to be a mentor to our Jordan's Syndrome siblings, and her unbelievable plans for the future.

She's truly a breath of fresh air, so if you'd like a podcast to make your heart happy this is the one for you!

 

Episode Eight: Meet the Akari Foundation

April 8, 2022

Navigating a rare disease diagnosis can be difficult for so many, but now there's a new resource specifically for the Hispanic Community. Meet The Akari Foundation!

The group is on a mission to provide families with access to information in Spanish. Join us as we chat about how they educate, empower and advocate for the Hispanic community in the rare disease space and how they can help you too.

Additional Resources:

-The Akari Foundation

Episode Seven: JGA Conference Update

March 25, 2022

This is a must click. Whether you’re attending the family conference in July in person or virtually, there is information for you here. PLEASE take a moment and click the link.

The entire JGA Team is here for this podcast to bring you up to speed.

Episode Six: The Piglet Mindset

March 11, 2022

Piglet is here! Piglet the deaf and blind pink puppy is hear to teach us all about love, kindness, how to work hard and persevere!

It's all about the Piglet mindset this week. Don't know what that is? Well now is your chance to find out, and see some REALLY adorable dogs along the way! Join us for a heartfelt conversation!

Additional Resources:

-Piglet on Facebook

-Piglet on Instagram

-Piglet on Twitter

-www.pigletmindset.org

 

Episode Five: MamaBearForRare

February 25, 2022

You know her, you love her, she's an incredible Mom, advocate for Jordan's Guardian Angels, Jordan's Syndrome and the rare community. She's MamaBearForRare Michelle Fruhschien!

We are so thrilled to sit down with Michelle to talk social media, advocating, putting yourself out there, how to balance ALL OF IT, and more. Michelle is one of the most uplifting, empowering and compassionate people you will meet and you won't want to miss this podcast!

Additional Resources:

-www.mamabearforrare.com

Episode Four: Living Ultra Rare

February 11, 2022

What's it like to have two Ultra Rare children? To not have any answers for years. To be searching for your community, your people, others who are dealing with the same situation you are. Then, what's it like to FINALLY find them?

It's the story of one Mom and Dad's journey to put the family in FAM177A1.

Additional Resources:

-FAM177A1: Two Siblings' Ultra-Rare Disease Odyssey

-Information about a genetic variant on the FAM177A1 gene

 

Episode Three: Talking Rare Disease Week!

January 28, 2022

Rare Disease Week on Capitol Hill is just a few weeks away and we want you to get involved! So what is it? How does it work? What do you do? How do you advocate? So many questions and so many answers for you as we sit down with the experts helping to put on an incredible event.

We talk with Sarita Edwards, Rare Disease Week on Capitol Hill Advocacy Vice Chair, and Shannon von Felden, Senior Director of Advocacy for EveryLife Foundation for Rare Diseases. As they say, it will truly change your life!

Additional Resources:

-EveryLife Foundation for Rare Diseases

-Register Here for Rare Disease Week

 

Episode Two: A Rare Dad’s Powerful Story

January 13, 2022

From Rare Dad, to Global Genes, to The Disorder Channel, to the Rare Disease Film Festival and everything in between, we sit down with Daniel DeFabio.

We talk advocating in the new media space, how to tell your story and help people to understand what you're going through. A candid conversation about grief but also celebration and why sharing your story might do a world of good.

Additional Resources: 

Types of Advocacy: https://www.rarediseasefilmfestival.com/blog/2022/1/5/the-8-stages-of-rare-disease-advocacy

List of Rare Podcasts: https://www.rarediseasefilmfestival.com/rarediseasepodcasts

One Sheets to bring to the hospital: https://courageousparentsnetwork.org/blog/whats-the-deal-with-your-kid-a-rare-dads-guide-to-minimizing-hospital-hassles

Episode One: Looking Ahead at 2022

January 1, 2022

Our very first podcast of 2022! We are SO excited and we want our families to be excited too for all the promise this year holds.

Tune in for new announcements and much more!

Season One

Episode Ten: We Are Thankful

December 17, 2021

We are so thankful for a wonderful year!

In this edition of A Rare Reality our team takes a look at all that we are thankful for as we reflect upon a HUGE year of growth for Jordan's Guardian Angels. We take a look back at 2021 and all that has been accomplished and look ahead to 2022 with bright eyes and open hearts. Thank you for tuning in!

Episode Nine: Getting to the Heart of the Matter

December 4, 2021

What makes members of our research team tick?

We sit down with one of them to find out why this research is different from anything they have done before, why it comes from the heart and why they won't stop until they find a treatment or a cure for Jordan's Syndrome.

Episode Eight: New Family Guide

November 20, 2021

So you've been diagnosed with Jordan's Syndrome. Now what? This is a step by step guide to getting the most out of Jordan's Guardian Angels.

This podcast is specifically geared toward our newly diagnosed families. We are here for you.

Additional Resources: 

Jordan's Guardian Angels Resource Center

Jordan's Syndrome Family Database

Joining the Research through Simons Search Light

 

Episode Seven: A Rare Reflection

November 13, 2021

This time, it's Yara's Dad's turn. We talk about the little girl who makes every room brighter, and how there's a memory that won't leave her Dad's brain: how she chose to reveal her love in her own way and the message for families waiting to make that same connection with their child.

Tune in for a heartfelt story you won't want to miss.

Episode Six: Bringing Speech & Language to Life

November 1, 2021

Bringing Speech and Language to Life with Creative and Alternative Therapies….. Whether your child is verbal, non-verbal, communicating in their own special way, beginning to talk or chatting up a storm this episode is for you.

We sit down with Speech and Language Pathologist Cathy Lauderbaugh (M.A., CCC-SLP) to discuss alternative communication strategies, for all levels, and the research supporting the strategies. Learn how to engage your child's community to help bring out the best in your child and so much more, from how to best support your child at school, at home and everywhere in between, to feeding therapy, hippotherapy and a message to families feeling overwhelmed. A Rare Reality you won't want to miss. 

Additional Resources:

www.creativestrategiestherapy.com

www.dynamictherapyservices.org

Grasshopper Feeding Therapy Information: Credit to Marsha Dunn Klein (featured in Krisi Brackett’s feeding blog): http://pediatricfeedingnews.com/grasshoppers/

 

Episode Five: You Are Not Alone

October 18, 2021

In the rare disease space, finding experts who know about your child's condition can be just as rare. So, we the parents step up, becoming the medical experts, the therapists, the teachers, and we hold the answers. But you are not alone!

We sit down with JGA Project Director Carole Bakhos to talk about becoming an expert for her daughter Yara, the struggles, the wins, and how not to give up when the stakes are high. A special series you won't want to miss!

Episode Four: Journey to a Cure

September 27, 2021

Join your JGA Team Members as we cover what it takes to build a foundation and sustain it from the ground up.

From forming your teams, to starting a registry and natural history study, to social media, engagement, fundraising and more, we cover what it's like to start from scratch. If you're in the rare disease world and wondering how to start, what to do next and what to know, or if you're feeling overwhelmed, you're not alone...or if you just want to hear our story, this podcast is for you!

Episode Three: A Rare Reflection

September 15, 2021

We’ve all had those moments with our children that are burned into our memories forever.

On this episode we sit down with MamaBearForRare Michelle Fruhschien to talk about her daughter, life with rare disease, the memory she won't ever forget and her message for families dealing with rare disease.

Episode Two: You Are Not Alone – Acceptance

August 10, 2021

When you're a rare family it's easy to feel like you're on an island, but far from it…. You Are Not Alone.

Join us as we sit down with Jordan’s Guardian Angels Project Director Carole Bakhos to talk about acceptance, and how being different is ok! A special series you won't want to miss.

Episode One: Living with Jordan's Syndrome

August 2, 2021

Welcome to our first ever podcast! In this episode we sit down with our lead researcher, the brilliant Dr. Wendy Chung to explain what Jordan’s Syndrome is, what it does to those diagnosed, what is ahead as we get closer to a treatment or a cure and more.

Then we sit down with a few of our Jordan’s Guardian Angels moms, including Co-Founder Cynthia Lang to get to the heart of it. What’s it like to get this diagnosis, how does this foundation give you hope, how relationships are everything, and a message to all the families out there dealing with Jordan’s Syndrome and rare disease.