A Rare Reality: Recent Episodes
Jordan's Guardian Angels
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.
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 […]
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 of hope for all of us. Truly a story you don’t want to miss.
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! :) Tune in, and then we want to know what your simple luxury is! Take a listen and then chime in on Facebook!
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 more.
For those of you with younger children planning for the future this is a must listen. A candid and very open conversation.
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 experience, and why this community has truly made her feel supported in every way.
Check out Extra Lucky Moms at www.extraluckymoms.com!
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 your life in so many ways.
Additional Resources: Visit Carole's and Christina's JGA profile for contact information if you have questions!
Effie Parks from Once Upon a Gene is Here!!!
Check out Effie's website here: https://effieparks.com
This is a conversation that so many of you should hear, all from the sibling point of view on what it’s like to have a sibling living with Jordan’s Syndrome. We think it’s incredibly refreshing, insightful and enlightening as well. Don’t miss this!
We sit down with comedian Hanna Evensen, whose comedy style is sure to bring a smile to your face! Hanna is very familiar with loving someone with special needs and it’s her unique approach to hard situations that will leave you with a laugh and lots of joy.
Join us as Hanna talks about how to find your light in life’s difficult moments, how to laugh in the heavy times, and her message to our community.
Find her on Instagram: @hannaecomedy
As part of our self care month we are joined again by a JGA FAVORITE, Life Coach and host of The Special Needs Mom podcast, Kara Ryska! We love her and her incredible insight.
Join us as we have a frank conversation about the importance of self care, why we shy away from it and how to make sure that you’re doing something everyday in service of self care. It’s a powerful talk and one you won’t want to miss. Kara is FANTASTIC!!
Learn more at https://www.kararyska.com.
Are you looking for a happier and healthier lifestyle? Now's you chance to find out new ways to do just that.
Join Mireille Bakhos (yes, it’s Carole’s Sister!) as she walks us through the Holistic Wellness Series JGA is hosting soon. We talk through the accessible and actionable steps you will take away from this incredible opportunity.
Learn more, including how you can sign up, on the JGA events page: https://jordansguardianangels.org/events/.
We have an incredible conversation with Mark Dant, Executive Director of the Ryan Foundation, about a Father’s love and how he moved mountains to save Ryan’s life. This is a special conversation with a special person, one that you won’t want to miss.
Now is the time, we need you more than ever to help us raise funds for Jordan’s Syndrome Research. Join our new Family Engagement Coordinator, Candice Huber as we discuss 7 Ways to Fundraise. Quick and easy (mostly) ideas to help you successfully raise funds with JGA. Please please take a moment and listen!
Are you looking for ways to connect to your JGA Team? Now is your chance! We breakdown all the ways to get involved, stay informed, and up to date. Don’t miss this one, it’s a big help for everyone including our new families and those who have been here a long time. Join us!
Additional Resources: https://jordansguardianangels.org/2023/01/19/click-here-for-every-way-to-connect-with-jga/
We are excited to kick off the new year and want you to know who is here working behind the scenes at JGA to support you!
The time has come for our favorite podcast of the year! Our THANKFUL PODCAST!!! For this final podcast of the year, your JGA team sits down to reflect on this incredible year and to discuss all the things we are thankful for! Take a minute and take a listen, you'll be thankful you did!
Sibling Support. It's a topic near and dear to our community. This week, we take a deep dive with Dr. Jessica Duis, Pediatrician of Clinical Genetics & Genomics at Children’s Hospital Colorado and Abby Turnwald, Certified Genetic Counselor at Dayton Children’s Hospital into their incredible research on siblings.
We look at what their findings mean for our families, how do parents use that information to help support siblings of a special needs child, and our own sibling Lexi Levine joins us to provide incredible insight. It's an enlightening and interesting look at the sibling experience and how we best support these wonderful people in a podcast you won't want to miss!
New Jordan’s Syndrome Publication Is Out! We sit down with our Project Director Carole Bakhos and Dr. Ghayda Mirzaa from Seattle Children’s Hospital, who you all know is part of our esteemed research team! Dr. Mirzaa takes us through what this publication has in it, what it tells us, and important new information that came out of it.
We also take a closer look at what it means to the medical community and to our families and how you can use it to spread the word about Jordan’s Syndrome around the world. Don’t miss this one, it’s important to our community.
We sit down with Adele Stuckey, Clinical Director and Owner of Alexandria Art Therapy. This could be a game changer for your family! We discuss what art therapy is, why it works, how it benefits people of all ages, those who are verbal and non-verbal, and even whole families. We also discuss the benefits for perinatal care, self care and more. This informative thirty minutes will open your eyes to an alternative form of therapy that is beneficial to millions of people around the world. Don’t miss it, you’ll learn so much!
Learn more: American Art Therapy Association: https://arttherapy.org/ & Art Therapy Credentials Board: https://www.atcb.org/
Ok, Moms, this one is for you! PLEASE PLEASE don’t miss this one. We are joined by Kara Ryska, Life Coach and host of The Special Needs Mom Podcast. We talk about Kara’s journey to becoming a special needs Mom, her podcast, her coaching, but we also dig deeper into what it takes to be a special needs Mom.
How do you give it your all? How can you be fully responsible for parenting a child when your child’s behavior doesn’t match your expectations? How do you take care of yourself, also known as PUTTING ON YOUR OWN OXYGEN MASK. Ladies, Kara is a breath of fresh air and you MUST hear her message to you. There will absolutely be something in this podcast that will resonate with you.
Kara's Website: https://www.kararyska.com
Have you ever wanted to tell your story or your child’s story and didn’t know where to start? This week we sit down with Abbey Hauser with Owning My Story.
She’s a young adult living with rare disease and an incredible voice in the rare disease community. Hear everything that she has been through with Classical Ehler’s-Danlos Syndrome, how she decided to own her story and her truly inspirational triumphs.
Abbey's Instagram: @_owningmystory_
Ok, that’s not what it means! So, what is Slack? And why are we on it? We take a closer look at the new platform JGA is using. How does it work? Why do we need it? How will it help? And where do you start? We answer all of your burning questions! AND have you visited our revamped resource center? It’s looking good! We take a closer look at what’s in there and how it can help you. Tune in!
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
We are taking a look back at our family conference this week! What worked, what needed work, special thank you’s and much more. Take a listen and see if you agree!
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.
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. Visit www.canine.org to learn more!
Tune in to hear the latest updates for the upcoming JGA Family Conference in New York City, now just days away! Click here to register or click here for virtual registration.
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, e-mail connect@jordansguardianangels.org.
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, you name it. Plus a list of places to use as a resource guide as you navigate your journey. This is a must listen!
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!
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 click the link… it is very important!
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!
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.
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.
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!
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!
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.
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!
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. Tune in for a candid conversation about grief but also celebration and why sharing your story might do a world of good.
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!
We are so thankful for a wonderful year! Un 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!
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.
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.
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. This is a heartfelt story you won't want to miss.
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.
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.
Join your JGA Team Memebers 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!
We've all had those moments with our children that are burned into our memories forever. On this episode we sit down with MamaBearForRare 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.
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 talk about acceptance, and how being different is ok – a special series you won't want to miss.