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 12 Commandments to guide you when you're starting a rare disease patient advocacy group - With Nasha Fitter and Mike Graglia
ONCE UPON A GENE - EPISODE 094 With The Mike and Nasha Part II FOXG1 advocate Nasha Fitter and SYNGAP1 advocate Mike Graglia are leaders in the rare disease…
Once Upon A GeneLeading the World Gene Therapy Program for CTNNB1 With Fellow Rare Mama - Špela Miroševič
ONCE UPON A GENE - EPISODE 093 Leading the World Gene Therapy Program for CTNNB1 With Fellow Rare Mama - Špela Miroševič Špela Miroševič is a fellow CTNNB1…
Once Upon A GeneEnabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments
ONCE UPON A GENE - EPISODE 092 Enabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments Sanath Kumar Ramesh’s son is one of…
Once Upon A GeneA Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff
ONCE UPON A GENE - EPISODE 091 Episode 091 - A Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff There's power in…
Once Upon A GeneEffisode - Family Camp, Annoying Brothers, and the Doom of Packing
Intro music by Scott Holmes
Once Upon A GeneMental Health and living with chronic stress with Rare Disease Dad and Psychologist, Al Freedman, Ph.D
ONCE UPON A GENE - EPISODE 090 Rare Disease Dad and Psychologist Al Freedman, Ph.D Al Freedman, Ph. D is a rare dad to a son with Spinal Muscular Atrophy…
Once Upon A GeneDiscovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle
ONCE UPON A GENE - EPISODE 089 Discovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle Exposed first hand to research…
Once Upon A GeneLiving with Persistent Uncertainty without a Rare Disease Diagnosis with Meghan Halley
ONCE UPON A GENE - EPISODE 088 Living with Persistent Uncertainty Without a Rare Disease Diagnosis - Meghan Halley I met Meghan Halley on the NORD Living Rare…
Once Upon A GeneA Rare Collection - Superheroes
ONCE UPON A GENE - EPISODE 087 A Rare Collection - Superheroes This is a new edition to the podcast that is built on the power of storytelling. This extra…
Once Upon A GeneWhy a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig
ONCE UPON A GENE - EPISODE 086 Why a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig Angela Lindig's daughter had a diagnosis of Atypical Rett for years…
Once Upon A GeneHelping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward
ONCE UPON A GENE - EPISODE 085 Helping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward Charles…
Once Upon A GeneEffisode - Putting the Play in Playground with DadVocate - Casey Parks
Intro Music by Scott Holmes
Once Upon A GeneRelief and Inspiration for Mothers of Children with Rare Diseases with Angel Aid Cares Founder - Cristol O'Loughlin
ONCE UPON A GENE - EPISODE 084 Relief and Inspiration for Mothers of Children with Rare Diseases with Angel Aid Cares Founder - Cristol O’Loughlin Angel Aid…
Once Upon A GeneAdvocates Come in Small Packages - My Life with Blau Syndrome with Keira Howell
ONCE UPON A GENE - EPISODE 083 Advocates Come in Small Packages - My Life With Blau Syndrome With Keira Howell Keira Howell is a twelve year old living with…
Once Upon A GeneRare Disease - The Ultimate Special Teams with Uplifting Athletes with Rob Long
ONCE UPON A GENE - EPISODE 082 Rare Disease - The Ultimate Special Teams with Uplifting Athletes with Rob Long Rob Long is the Executive Director at Uplifting…
Once Upon A GeneRare Disease Adoption with Josh and Monica Poynter
ONCE UPON A GENE - EPISODE 081 Rare Disease Adoption with Josh and Monica Poynter Josh and Monica Poynter have a son named Tag with severe Hemophilia Type A, a…
Once Upon A GeneRare Disease and Grief - Its Ok That You're Not Ok with Megan Devine
ONCE UPON A GENE - EPISODE 080 Rare Disease and Grief - It’s OK That You’re Not OK with Megan Devine Megan Devine is the author of It's OK That You're Not OK…
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Creating Space for Mental Health for Men Living with Rare Diseases with David Ross
David Ross is a patient advocate, passionate about mental health and creating space for males experiencing mental health struggles. His activism began in 2017…
Once Upon A GeneMedia with a Mission with Believe Limited CEO Patrick James Lynch
Media with a Mission with Believe Limited CEO Patrick James Lynch Patrick James Lynch has to inject himself with medication every other day because his liver…
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Top Tips on Advocating For Your Child with Momvocate Kara Karlson
Kara Karlson is a fellow rare disease mama and attorney who is advocating hard in the policy world. She's currently serving on the Governor's Developmental…
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Effisode - Nacho, Nacho Man
TUNE INTO THE ONCE UPON A GENE PODCAST Spotify Apple Podcasts Stitcher Overcast CONNECT WITH EFFIE PARKS Website Twitter Instagram Built Ford Tough Facebook…
Once Upon A GeneAllStripes - Jump Start New Research for Your Rare Disease with Caitlin Nichols
ONCE UPON A GENE - EPISODE 076 AllStripes: Jump Start New Research for Your Rare Disease with Caitlin Nichols Caitlin Nichols is the Scientific Affairs and…
Once Upon A GeneRare Mom Madeline Cheney - The Rare Life Podcast
Fellow rare mom and podcast host, Madeline Cheney, is joining me for a chat today. Be sure to check out her podcast, The Rare Life Podcast. And don't forget to…
Once Upon A GeneRare Disease Mom Chat with Mariah Gillaspie - Lightning and Love Foundation
Mariah Gillaspie started the Lightning and Love Foundation for her two daughters, Abby and Emma, who both have the only known mutation of the fact THAP12 gene…
Once Upon A GeneDavid Solomon - CEO of Pharnext - A Biopharmaceutical Company
Dr. David Solomon is the CEO of Pharnext, an advanced clinical-stage biopharmaceutical company using artificial intelligence to create therapies for rare and…
Once Upon A GeneThe Importance of Early Intervention with Kindering CEO Lisa Greenwald
ONCE UPON A GENE - EPISODE 072 The Importance of Early Intervention with Kindering CEO Lisa Greenwald Early intervention or birth to three are the vital…
Once Upon A GeneAccelerating Clinical Research - Harsha Rajasimha, Founder and CEO of Jeeva Informatics
After losing his child to a rare congenital disease in 2012, Harsha Rajasimha applied his years of post-doctoral genomics data research experience at National…
Once Upon A GeneCure VCP With Rare Disease Trailblazer - Nathan Peck
Nathan Peck is a dadvocate living with an adult onset disease. He's also the Founder and CEO of Cure VCP Disease. Through Cure VCP Disease, Nathan and his wife…
Once Upon A GeneBen's Friends A Rare Disease Social and Support Platform with Ben Munoz
Rare Disease Day is on Sunday, February 28th, 2021 and I'd love to know how you're celebrating and what Rare Disease Day means to you. Share a short voicemail…
Once Upon A GeneConnecting the Dots From Patients to Researchers with Jason Colquitt - CEO of Across Healthcare
Jason Colquitt is the CEO of Across Healthcare and he has 20 years experience in the healthcare technology field where his work has caused a positive…
Once Upon A GeneHippotherapy and Adaptive Riding with Little Bit Therapeutic Riding Center
I have asked Ford's therapists, Kelsie McGladrey and Christina Reyer to join me to discuss what therapies we should be doing with our kids and to talk in depth…
Once Upon A GeneRare Mama - Nikki McIntosh - Navigating Life with Rare
Nikki McIntosh has been featured on The Disorder Channel in Life & Atrophy, a film about the day-to-day of raising a child with Spinal Muscular Atrophy and as…
Once Upon A GeneBeginners Guide to Rare Disease - Anecdotes For Those Early Days of Diagnosis with Daniel DeFabio
Daniel DeFabio and I are having a parent-to-parent discussion and bringing you guidance if you are a newly diagnosed family. We'll give you insight into our…
Once Upon A GeneEffisode - Never Underestimate the Determination of Your Child
Intro music by Scott Holmes
Once Upon A GeneSeth Rotberg Founder of Our Odyssey and His Mental Health Surrounding a Huntington’s Disease Diagnosis
Our Odyssey is an organization that supports young adults living with rare disease and chronic illness. The founder of Our Odyssey, Seth Rotberg, is…
Once Upon A GeneThe Life of an Angel Diagnosed with Blau Syndrome with Cheryl-Lynn Townsin
Cheryl-Lynn Townsin is the mom to Lexi and Felix and the Director of the film, Me, My Sister and Blau. I fell in love with this family when I saw their film…
Once Upon A GeneCookies4Cures with Dana Perella
Dana Perella has raised almost $200,000 to help fund research for rare pediatric diseases through Cookies4Cures. EPISODE HIGHLIGHTS Tell me where you're from…
Once Upon A GeneThe Glass Child - Being a Sibling to My Rare Disease Sisters with Madison McLaughlin
As a young girl, Madison McLaughlin made her way to LA to pursue acting and she's held roles in Chicago PD, Supernatural and Arrow. But she's also a rare…
Once Upon A GenePediatric Occupational Therapy with OT4Lyfe - Sarah Putt
Sarah Putt is the host of the OT4Lyfe Podcast, where she interviews thought leaders in the occupational therapy community. Sarah is discussing early…
Once Upon A GeneTurkey Soup for the Soul
The Once Upon a Gene Merch Shop is open for pre-orders through December 6th. Check out the new products added to the shop before it’s too late! Based on the…
Once Upon A GeneSLC13A5 - TESS Research Foundation with Kim Nye
ONCE UPON A GENE - EPISODE 057 SLC13A5 - TESS Research Foundation with Kim Nye Kim Nye is the mother of four children and the President and Co-Founder of the…
Once Upon A GeneRare Leader - Patricia Weltin, CEO, Beyond the Diagnosis
ONCE UPON A GENE - EPISODE 056 Rare Leader - Patricia Weltin, CEO, Beyond the Diagnosis Patricia Weltin shares her organization, Beyond the Diagnosis, an art…
Once Upon A GeneOne Woman’s Kindness Sparks a Neighborhood To Do the Same
ONCE UPON A GENE - EPISODE 055 One Woman’s Kindness Sparks a Neighborhood To Do the Same We live in Mercer Island, a beautiful city across the bridge from…
Once Upon A GeneEffisode - Friendship, Inclusion, and Tough Conversations
Intro music by Scott Holmes