Shows / Once Upon A Gene
Once Upon A Gene
As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded…
Episodes
Once Upon A GeneThe Value of Intensive Therapy for Kids with Disabilities with Jessie Cline and Erin Garrison of Climb Intensive Pediatric Therapy
ONCE UPON A GENE - EPISODE 136 The Value of Intensive Therapy for Kids with Disabilities with Jessie Cline and Erin Garrison of Climb Intensive Pediatric…
Once Upon A GeneA Rare Collection - Up At Night
ONCE UPON A GENE - EPISODE 135 A Rare Collection - Up at Night There's power in storytelling- for the listener and the storyteller. A Rare Collection is a…
Once Upon A GeneThe Critical Role of Newborn Screening - Rare Mom Alison Breitbarth and Infantile Pompe Disease
ONCE UPON A GENE - EPISODE 134 The Critical Role of Newborn Screening - Rare Mom Alison Breitbarth and Infantile Pompe Disease Alison Breitbarth's son was the…
Once Upon A GeneRare Disease Caregiving Post Childhood with Rare Mom and Primary Ciliary Dyskinesia Advocate Karen McEwen
ONCE UPON A GENE - EPISODE 132 Rare Disease Caregiving Post Childhood with Rare Mom and Advocate Karen McEwen Karen McEwen has an 18 year old daughter with…
Once Upon A GeneKelley Coleman - Author of You will Feel Better - A Guidebook for Rare Disease Parents
ONCE UPON A GENE - EPISODE 131 Kelley Coleman - Author of You will Feel Better - A Guidebook for Rare Disease Parents Kelley Coleman is a mom and writer who is…
Once Upon A GeneA Rare Collection - Penny For Your Thoughts
ONCE UPON A GENE - EPISODE 130 A Rare Collection - Penny for your Thoughts There's power in storytelling- for the listener and the storyteller. A Rare…
Once Upon A GeneSelf Care for Your Healthcare with Ehlers Danlos Patient and Ms. Wheelchair Washington USA - Sarah Tompkins
ONCE UPON A GENE - EPISODE 129 Self Care for Your Healthcare with Ehlers Danlos Patient and Ms. Wheelchair Washington USA - Sarah Tompkins Ms. Wheelchair…
Once Upon A GeneSisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing
ONCE UPON A GENE - EPISODE 128 Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing…
Once Upon A GeneBuilding a Different Kind of Motherhood Experience Than We Had Anticipated with CDKL5 Deficiency Disorder Mom and Founder of Art For Hope Love Cure, Marissa Bishop
ONCE UPON A GENE - EPISODE 127 Building a Different Kind of Motherhood Experience Than We Had Anticipated with CDKL5 Deficiency Disorder Mom and Founder of Art…
Once Upon A GeneA Rare Collection - Unexpected Findings
ONCE UPON A GENE - EPISODE 126 A Rare Collection - Unexpected Findings There's power in storytelling- for the listener and the storyteller. A Rare Collection…
Once Upon A GeneA Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure - Katie Lloyd
ONCE UPON A GENE - EPISODE 125 A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure - Katie Lloyd Katie…
Once Upon A GeneAdapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere
ONCE UPON A GENE - EPISODE 124 Adapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere…
Once Upon A GeneEffisode - The Unicorns - Random Acts of Kindness in the Rare Community
Intro music by Scott Holmes
Once Upon A GeneA Rare Collection - This Is Us
ONCE UPON A GENE - EPISODE 122 A Rare Collection - This is Us There's power in storytelling- for the listener and the storyteller. A Rare Collection is a…
Once Upon A GeneHow the Caregivers Mental Health and Physical Well-Being are Impacted Right Alongside Our Rare Disease Kiddos with Advocate and Co-Founder of Hello Sleuth - Sehreen Noor Ali
ONCE UPON A GENE - EPISODE 121 How the Caregivers Mental Health and Physical Well-Being are Impacted Right Alongside Our Rare Disease Kiddos with Advocate and…
Once Upon A GeneWhat Happens Now - Baby Boy is a Medical Miracle After Being Treated for Spinal Muscular Atrophy Type 1 with Kathryn Alexander
ONCE UPON A GENE - EPISODE 120 What Happens Now - Baby Boy is a Medical Miracle After Being Treated for Spinal Muscular Atrophy Type 1 with Kathryn Alexander…
Once Upon A GeneOne of the Youngest Children to be Given Treatment for Spinal Muscular Atrophy I with Kathryn Alexander
ONCE UPON A GENE - EPISODE 119 One of the Youngest Children to be Given Treatment for Spinal Muscular Atrophy I with Kathryn Alexander Kathryn Alexander is the…
Once Upon A GeneAmbiguous Medical Plans - How to Figure Out a System Even When it Seems Impossible with Parvathy Raman Krishnan
ONCE UPON A GENE - EPISODE 118 Ambiguous Medical Plans - How to Figure Out a System Even When it Seems Impossible with Parvathy Raman Krishnan Parvathy…
Once Upon A GeneA Rare Collection - New Beginnings
ONCE UPON A GENE - EPISODE 117 A Rare Collection - New Beginnings There's power in storytelling- for the listener and the storyteller. A Rare Collection is a…
Once Upon A GeneA Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen
ONCE UPON A GENE - EPISODE 116 A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen Luke Rosen is a dadvocate who founded the…
Once Upon A GeneCreate Conversation, Community, and Change with Author of Loving You Big - Leah Moore
ONCE UPON A GENE - EPISODE 115 Create Conversation, Community, and Change with Author of Loving You Big - Leah Moore Leah Moore won a prestigious award for…
Once Upon A GeneThe Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
ONCE UPON A GENE - EPISODE 114 The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with…
Once Upon A GeneA Rare Collection - Lullabies
ONCE UPON A GENE - EPISODE 113 A Rare Collection- Lullabies There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly…
Once Upon A GeneBeing Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay
ONCE UPON A GENE - EPISODE 112 Being Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay Jessica Patay has three kids- one…
Once Upon A GeneThe Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger
ONCE UPON A GENE - EPISODE 111 The Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger Elisa Seeger lost her son Aidan as a…
Once Upon A GeneEffisode - Grief and Joy are Mingling this Holiday Season
Intro music by Scott Holmes
Once Upon A GeneTurkey Soup for the Soul and Stories About Rare Unicorns Who Show Up in Our Lives with Tyra Skibington and Tracey Beckett
ONCE UPON A GENE - EPISODE 110 Turkey Soup for the Soul and Stories About Rare Unicorns Who Show Up in Our Lives In this special Thanksgiving episode, Tyra…
Once Upon A GeneA Rare Collection - Rare Disease Storytelling - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins
ONCE UPON A GENE - EPISODE 109 A Rare Collection - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins There's power in storytelling-…
Once Upon A GeneFinding Hope From Diagnosis to Action - LMNA Related Congenital Muscular Dystrophy - Hannah Lowe
ONCE UPON A GENE - EPISODE 108 Finding Hope: From Diagnosis to Action - LMNA Related Congenital Muscular Dystrophy - Hannah Lowe Hannah Lowe is the President…
Once Upon A GeneThe Joy Doesn't Need to be Ambiguous Even Though The Grief is with Rare Merrf Disorder Mom - Jessica Fein
ONCE UPON A GENE - EPISODE 107 The Joy Doesn't Need to be Ambiguous Even Though The Grief Is - Rare MERRF Syndrome Mom Jessica Fein Jessica Fein is the mom to…
Once Upon A GeneRare Book Club with Co-Host Patti Hall - Featuring Heather Lanier and Her Book, Raising a Rare Girl
ONCE UPON A GENE - EPISODE 106 Rare Book Club with Co-Host Patti Hall - Featuring Heather Lanier and Her Book, Raising a Rare Girl Fellow rare moms, Patti Hall…
Once Upon A GeneRaising a Son with Batten Disease and the Importance of Never Giving Up with Project Sebastian Founder Christopher Velona
ONCE UPON A GENE - EPISODE 105 Raising a Son with Batten Disease and the Importance of Never Giving Up with Project Sebastian Founder Christopher Velona…
Once Upon A GeneA Rare Collection - Rare Disease Storytelling with Felix Townsin, Erica Jolene Stearns, Brianna Colquitt, and Mahrynn McLaughlin
ONCE UPON A GENE - EPISODE 104 A Rare Collection- Stories of Courage with Felix Townsin, Erica Jolene Stearns, Mahrynn McLaughlin and Brianna Colquitt There's…
Once Upon A GeneHow We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue, and Decision Fatigue with Counselor Rose Reif
ONCE UPON A GENE - EPISODE 103 How We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue and Decision Fatigue…
Once Upon A GeneStrength - How We View It, Define It and Move Through Life with Rare Disease and Chronic Illness with Marni Cartelli
ONCE UPON A GENE - EPISODE 102 Strength: How We View It, Define It and How It Changes As We Move Through Life With Rare Disease and Chronic Illness - Marni…
Once Upon A GeneFinding Beauty and Connection When Raising a Medically Complex Kiddo with Melanie Dimmitt - Author of Special - Antidotes to the Obsessions that Come with a Child's Disability
ONCE UPON A GENE - EPISODE 101 Finding Beauty and Connection When Raising a Medically Complex Kiddo with Melanie Dimmitt - Author of Special: Antidotes to the…
Once Upon A GeneA Rare Collection - Rare Disease Storytelling with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point
ONCE UPON A GENE - EPISODE 100 A Rare Collection- Because of You with Kyle Bryant, Jennifer Siedman, Liz Morris, and Ashley Fortney Point There's power in…
Once Upon A GeneStrength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan Quill
ONCE UPON A GENE - EPISODE 099 Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan…
Once Upon A GeneFive Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with Perlara Founder and CEO - Ethan Perlstein
ONCE UPON A GENE - EPISODE 098 Five Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with…
Once Upon A GeneA Mother's Story of Finding Your People, Accepting a Diagnosis and Loving Her Kid for Exactly Who She is with Jordan's Guardian Angels Mom - Carole Bakhos
ONCE UPON A GENE - EPISODE 097 A Mother's Story of Finding Your People, Accepting a Diagnosis and Loving Her Kid for Exactly Who She is with Jordan's Guardian…
Once Upon A GeneFinding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short
ONCE UPON A GENE - EPISODE 096 Finding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short Billie Short is the mom of a 20 year old…
Once Upon A GeneA Rare Collection - Rare Disease Storytelling - Skin In the Game with Adam Johnson, Nathan Peck and Marni Cartelli
ONCE UPON A GENE - EPISODE 095 A Rare Collection- Skin in the Game with Adam Johnson, Nathan Peck and Marni Cartelli There's power in storytelling- for the…