Once Upon A Gene

By Effie Parks

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Category: Personal Journals

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Subscribers: 4
Reviews: 0
Episodes: 301

Description

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, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

Episode Date
Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska
Apr 25, 2024
From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
Apr 18, 2024
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
Apr 11, 2024
The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed
Apr 04, 2024
Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio
Mar 28, 2024
Krabbe Disease with Kasey Feldt
Mar 21, 2024
BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay
Mar 14, 2024
A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action
Mar 07, 2024
Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini
Feb 29, 2024
James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child
Feb 22, 2024
More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade
Feb 15, 2024
Uniting Science and Hope - COMBINEDBrain and it's Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell
Feb 08, 2024
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
Feb 01, 2024
Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay
Jan 25, 2024
Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford
Jan 18, 2024
A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari
Jan 11, 2024
Finding Strength In Every Step
Jan 08, 2024
Pain Points on the Disorder Channel with Daniel DeFabio and Bo Bigelow -This Festivus, Let the Airing of Grievances Begin
Dec 21, 2023
The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia
Dec 14, 2023
GeneDX - A Genetic Diagnosis Matters with Gay Grossman and Paul Kruszka
Dec 08, 2023
A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies
Nov 30, 2023
Turkey Soup for the Soul
Nov 23, 2023
Breaking Barriers in Brain Health with Tracy Dixon-Salazar, PhD
Nov 16, 2023
Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping - Schuetz
Nov 09, 2023
Palliative Care & the Courageous Parent Network with Founder Blyth Lord
Nov 04, 2023
Figuring Out How to Infuse Meaning in the Days After the Loss of a Child and the Daunting Task of What the Hell to do Now with Liz Morris
Nov 04, 2023
Mastering the Art of the Supermarket Answer When Someone Asks, How Are You with Jennifer Siedman
Nov 02, 2023
From Heartbreak to Hope - With CEO of Parent Project Muscular Dystrophy, Pat Furlong
Oct 26, 2023
Effisode - The Irony of it All
Oct 24, 2023
These Two Rare Disease Parents Never Met Until Now and Have Everything In Common - Chronic Compassion Chronicles with Kim Gilsdorf and Daniel DeFabio
Oct 19, 2023
Utilizing Child Life Specialists - Empowering Rare Disease and Medically Complex Families in Hospitals Nationwide with Child Life On Call Founder - Katie Taylor
Oct 12, 2023
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
Oct 05, 2023
Effisode - 2023 SynGAP Cannonball for a Cure
Oct 03, 2023
Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens
Sep 28, 2023
Navigating Parenthood as a Rare Mom - Expert Insights into Special Needs Financial Planning with Mary McDirmid from Special Abilities Network
Sep 21, 2023
Effisode - The Unconventional Toothfairy
Sep 19, 2023
Advocating with Heart - Striking the Balance Between Medical Insights and Personal Narratives - A Tribute to Valerie Marie with RING14 Co-Founder Yssa Dean DeWoody
Sep 14, 2023
Rare Disease Dad Chronicles - From Stay-At-Home Fatherhood to My Mejo Co-Founder A Journey Through Costello Syndrome and Parenthood Challenges with Dadvocate - Ryan Sheedy
Sep 07, 2023
Effisode - Summer Camp for Medically Complex Kids
Sep 05, 2023
A Rare Collection - Schools Out for the Summer
Jul 27, 2023
Anecdotes From a Rare Disease Dad of an Adult Son with NR4A2 with Joe Henry
Jul 20, 2023
A Guide for Rare Disease Patient Advocacy Groups - Choosing and Designing a Patient Registry with Sophia Zilber
Jul 13, 2023
Claudia Gonzaga Jauregui
Jul 06, 2023
From the Rare Disease Bunker to Many More Birthdays - A Tale of a Gene Therapy that Cures her Daughter with AADC Deficiency - The First Spanish Patient - with Carolina Moreno
Jun 22, 2023
A Rare Collection - A Father's Day Special - Amidst the Storm
Jun 15, 2023
SCN8A Rare Mom - The Inch Stone Project and DEE-P Connections - Creating Better Tools, Resources and Research for the Most Severely Affected Families with Gabi Conecker
Jun 08, 2023
Developing Personalized Therapeutics for Ultra Rare Patients with La Jolla Labs CEO Jeff Milton
Jun 01, 2023
How Being a Mom to Twins with a Rare and Undiagnosed Condition Has Shaped Rare Mom, Scientist and Co-Founder of the MAST Genes Research Foundation with Dr. Kim Aldinger
May 25, 2023
Effisode - Are We The Actors
May 23, 2023
A Rare Collection - Keep Digging
May 18, 2023
The Tréxō Robot and the Many Benefits of this Technology for Kids with Disabilities with the Founder and CEO Manmeet Maggu
May 11, 2023
The Outlet - How Chris Anselmo Used Writing to Connect with Other Rare Disease Families and Come to Terms with His Own Diagnosis of Limb-Girdle Muscular Dystrophy
May 04, 2023
A Rare Collection - Wishing Well
Apr 20, 2023
Effisode - The Ultimate Rare Disease Resource Guide
Apr 18, 2023
Doctor and Rare Disease Dad Is On A Mission to Accelerate Research and Drug Development Efforts for His Childs KCNT1 Epilepsy with Dadvocate Dr. Justin West
Apr 14, 2023
Helping Undiagnosed Patients Who Experience Symptoms of Rare Diseases Find Answers with Free Genetic Testing in a Matter of Weeks with Probably Genetic CEO Lukas Lange
Apr 06, 2023
Effisode - There's No Crying In Baseball
Apr 04, 2023
Patients and Caregivers Being Compensated to Tell Their Stories and Get Connected to Research Opportunities with Rare Patient Voice Founder Wes Michael
Mar 30, 2023
Take Part Founders and PYROXD-1 Parents - Matt and Maria Granados
Mar 23, 2023
Effisode - Wheelchairs and Walls
Mar 21, 2023
A Rare Collection - Exhausted and Energized
Mar 16, 2023
Real Rare Mama Shop Talk - Deciding What We Share About Our Lives and Recognizing How Far We've Come with Each Passing Year with Alyssa Poskarbiewicz CHARGE Syndrome Mom
Mar 09, 2023
Love, Hope and Cure SYNGAP
Feb 28, 2023
Every Patient Matters - Discovering, Developing, and Providing Experimental ASO Treatments to Nano-Rare Patients for Free with n-Lorem Founder and CEO Stan Crooke
Feb 23, 2023
Effisode - Rare Disease Day Events
Feb 22, 2023
A Rare Collection - To the Moon and Back
Feb 16, 2023
Honoring a Husbands Legacy by Finishing His Work on a Documentary About Rare Disease Acute Flaccid Myelitis and Her Own Grief Along the Way with Sarah Potter
Feb 09, 2023
Effisode - Barbara Is Real
Feb 07, 2023
From Cancer Biologist to Rare Disease Mom - Digging Into the Data to Better Understand SCN8A with Madeleine Oudin PhD - Professor of Biomedical Engineering at Tufts
Feb 02, 2023
Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella
Jan 26, 2023
Effisode - Seizures Are Stupid
Jan 24, 2023
A Rare Collection - New Beginnings
Jan 19, 2023
Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO Dadvocate Andrés Treviño
Jan 12, 2023
Effisode - The Friendship Circle
Jan 10, 2023
Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel
Jan 05, 2023
Care Team Prescription - The Importance of Clinical Pharmacists with Chase Palmer
Dec 29, 2022
Effisode - Rare Disease Day 2023
Dec 27, 2022
A Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD
Dec 22, 2022
A Rare Collection - Holiday Cheer
Dec 15, 2022
Effisode - Presents, Portraits and Beyond the Diagnosis
Dec 13, 2022
The Clinical Pharmacist - Why They Are A VIP For Our Care Team and How We Can Get to Know Them - With NARS1 Rare Disease Mom - Rachel Heilmann
Dec 08, 2022
How Far We've Come - A Look at the FOXG1 Research and Family Conference with Rare Mama and Co Founder Nicole Johnson
Dec 01, 2022
Effisode - Fire and Ice
Nov 29, 2022
Your Career and Personal Life Collide - Senior Vice President, Head of Development and Safety of Alexion, AstraZeneca and Smith Magenis Rare Disease Dad Gianluca Pirozzi
Nov 24, 2022
A Rare Collection - Beep, Beep, Beep
Nov 17, 2022
Effisode - The List
Nov 15, 2022
A Mom's Advocacy For Her Son Who Has Hemophilia B Led to Her Own Diagnosis - With Stormy Johnson
Nov 10, 2022
Social Security Disability Revealed - Why It's So Hard to Access Benefits and What You Can Do About It with Spencer Bishins
Nov 03, 2022
Effisode - Chasing Greenlights
Nov 01, 2022
Medical Student - Urvi Gupta Joins the Global Genes Rare Compassion Program with Alexions Patient Advocacy Champion Wendy Erler
Oct 27, 2022
The Effects of Rare Disease on Relationships and How to Cope When You and Your Partner Have Different Strategies with KCNH1 Founder and Rare Mama Michaelle Jinnette
Oct 20, 2022
Effisode - Gravity
Oct 18, 2022
A Rare Collection - Batten Down the Hatches
Oct 13, 2022
CRELD1 Dadvocate Paying the Ultimate Price - Seeking Diagnosis for His Two Children, and Raising Awareness with Adam Clatworthy
Oct 06, 2022
Effisode - Gilmore Girls, Pumpkin Spice, and Baja
Oct 04, 2022
A Groundbreaking Gene Therapy In Record Time to Cure His Son with SPG50 Sets a New Course For Future Rare Disease Treatments with Terry Pirovalakis
Sep 29, 2022
Improving Inclusion Practices in Schools with the Inclusive Educator - Bre Gastaldi
Sep 22, 2022
Effisode - Shake It Off
Sep 20, 2022
A Rare Collection - Underestimated
Sep 15, 2022
Rare Friends Forever - Hanging Out and Showing Some Love to Brene Brown with Katie Lloyd and Adam Johnson
Sep 08, 2022
Effisode - Inclusion Revolution
Sep 06, 2022
Rare Disease Families Have Plenty of Hope - What They Need is Help. Transforming Drug Development w/ NF2 Biosolutions, Nicole Henwood & Vibe Bio, Alok Tayi
Sep 01, 2022
Together We Can Cure Single-Gene Disorders Starting with PGAP3 - Moonshot - An Ambitious and Innovative Project with Geri and Zach Landman
Aug 25, 2022
Effisode - Montana or Bust
Aug 23, 2022
Rare Disease Siblings, The Glass House Children - Bulletproof and Shattered - With SMA Sibling Cara Freedman
Aug 18, 2022
A Rare Collection - Easier Said Than Done
Aug 11, 2022
Effisode - The Lunchboxes
Aug 09, 2022
When Your Career and Personal Life Collide - VP of Medical and Science Strategy and Head of Syneos Health's Rare Disease Consortium FSHD Rare Dad - Raymond Huml
Aug 04, 2022
Ensuring that the Patient and Caregiver Voice are Part of Clinical Trial Design and Engagement - Bridging the Gap with Industry with Shazia Ahmad
Jul 28, 2022
Effisode - CTNNB1 Awareness Day - Rare Disease Family Meet-Up
Jul 26, 2022
Summer Surfing - Get On Top of the IEP Wave - Things You Can Do This Summer to Make Next Year Better with Gay Grossman
Jul 21, 2022
A Rare Collection - I Will Never Forget
Jul 14, 2022
Effisode - Back on Track - All Aboard the Inclusion Train
Jul 12, 2022
Half of the Day She's a Diversity Champion, the Other Half a Rare Disease Mom and Caregiver with Yosr Hamza
Jul 07, 2022
A Rare Mama Bear - Being a Single Parent and Adopting a Rare Disease Child with Epidermolysis Bullosa
Jun 30, 2022
Effisode - Global Genes RARE Disease Patient Advocacy Summit
Jun 28, 2022
Picking the Brain of a Rare Disease Dad - With CTNNB1 Dadvocate - Casey Parks
Jun 23, 2022
A Rare Collection - Remember Who You Are
Jun 16, 2022
Effisode - Find Your Fairy Godmother
Jun 14, 2022
Episode 138 - When Your Child is Facing the Most Severe Form of Human Epilepsy You fight Until the Death - Literally - Chelsea's Hope Lafora Children Research Fund with Niki Markou and Jenifer Merriam
Jun 09, 2022
Advancing Therapies for Rare Liver Diseases and Alagille Syndrome with FDA Approved LIVMARLI with Chris Peetz - CEO of Mirum Pharmaceuticals
Jun 02, 2022
Effisode - Guilt - Ain't Nobody Got Time for That
May 31, 2022
The Value of Intensive Therapy for Kids with Disabilities with Jessie Cline and Erin Garrison of Climb Intensive Pediatric Therapy
May 26, 2022
A Rare Collection - Up At Night
May 19, 2022
Effisode - RARE Entrepreneur Bootcamp Warriors
May 17, 2022
The Critical Role of Newborn Screening - Rare Mom Alison Breitbarth and Infantile Pompe Disease
May 12, 2022
The Unique Expertise of a Genetic Counselor - Helping Rare Disease Individuals and Families Navigate Through Complex Emotions and Circumstances Like Guilt, Grief, and Shame with Mary-Frances Garber
May 05, 2022
Effisode - I Don't Like That
May 03, 2022
Rare Disease Caregiving Post Childhood with Rare Mom and Primary Ciliary Dyskinesia Advocate Karen McEwen
Apr 28, 2022
Kelley Coleman - Author of You will Feel Better - A Guidebook for Rare Disease Parents
Apr 21, 2022
Effisode - Gimme a Break, Spring Break
Apr 19, 2022
A Rare Collection - Penny For Your Thoughts
Apr 14, 2022
Self Care for Your Healthcare with Ehlers Danlos Patient and Ms. Wheelchair Washington USA - Sarah Tompkins
Apr 07, 2022
Effisode - A Perfect Day for a Walk
Apr 05, 2022
Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing
Mar 31, 2022
Building 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
Mar 24, 2022
Effisode - Grocery Store Answers
Mar 22, 2022
A Rare Collection - Unexpected Findings
Mar 17, 2022
A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure - Katie Lloyd
Mar 10, 2022
Effisode - Moments
Mar 08, 2022
Adapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere
Mar 03, 2022
Effisode - The Unicorns - Random Acts of Kindness in the Rare Community
Feb 22, 2022
A Rare Collection - This Is Us
Feb 17, 2022
How 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
Feb 10, 2022
Effisode - Bathroom Floor Moments
Feb 08, 2022
What Happens Now - Baby Boy is a Medical Miracle After Being Treated for Spinal Muscular Atrophy Type 1 with Kathryn Alexander
Feb 03, 2022
One of the Youngest Children to be Given Treatment for Spinal Muscular Atrophy I with Kathryn Alexander
Jan 27, 2022
Effisode - Oh Goody - Anxiety is Visiting
Jan 25, 2022
Ambiguous Medical Plans - How to Figure Out a System Even When it Seems Impossible with Parvathy Raman Krishnan
Jan 20, 2022
A Rare Collection - New Beginnings
Jan 13, 2022
Effisode - Rare Disease Day
Jan 11, 2022
A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen
Jan 06, 2022
Create Conversation, Community, and Change with Author of Loving You Big - Leah Moore
Dec 30, 2021
Effisode - The Kindness of Strangers
Dec 28, 2021
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
Dec 23, 2021
A Rare Collection - Lullabies
Dec 16, 2021
Effisode - The Magic of Friendship at the North Pole
Dec 14, 2021
Being Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay
Dec 09, 2021
The Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger
Dec 02, 2021
Effisode - Grief and Joy are Mingling this Holiday Season
Nov 30, 2021
Turkey Soup for the Soul and Stories About Rare Unicorns Who Show Up in Our Lives with Tyra Skibington and Tracey Beckett
Nov 25, 2021
A Rare Collection - Rare Disease Storytelling - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins
Nov 18, 2021
Effisode - Find the Connection
Nov 16, 2021
Finding Hope From Diagnosis to Action - LMNA Related Congenital Muscular Dystrophy - Hannah Lowe
Nov 11, 2021
The Joy Doesn't Need to be Ambiguous Even Though The Grief is with Rare Merrf Disorder Mom - Jessica Fein
Nov 04, 2021
Effisode - Cinderella, Cinderella
Nov 02, 2021
Rare Book Club with Co-Host Patti Hall - Featuring Heather Lanier and Her Book, Raising a Rare Girl
Oct 28, 2021
Raising a Son with Batten Disease and the Importance of Never Giving Up with Project Sebastian Founder Christopher Velona
Oct 21, 2021
Effisode - Two Disabled Dudes
Oct 19, 2021
A Rare Collection - Rare Disease Storytelling with Felix Townsin, Erica Jolene Stearns, Brianna Colquitt, and Mahrynn McLaughlin
Oct 14, 2021
How We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue, and Decision Fatigue with Counselor Rose Reif
Oct 07, 2021
Effisode - The Kids Do NAPA Center in Los Angeles
Oct 05, 2021
Strength - How We View It, Define It and Move Through Life with Rare Disease and Chronic Illness with Marni Cartelli
Sep 30, 2021
Finding 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
Sep 23, 2021
Effisode - Road Trip to NAPA Center
Sep 21, 2021
A Rare Collection - Rare Disease Storytelling with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point
Sep 16, 2021
Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan Quill
Sep 09, 2021
Effisode - Ford Goes to Kindergarten
Sep 07, 2021
Five Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with Perlara Founder and CEO - Ethan Perlstein
Sep 02, 2021
A 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
Aug 26, 2021
Effisode - From the Sidelines
Aug 24, 2021
Finding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short
Aug 19, 2021
A Rare Collection - Rare Disease Storytelling - Skin In the Game with Adam Johnson, Nathan Peck and Marni Cartelli
Aug 12, 2021
Effisode - Rare and Relatable - Rare Disease Stories on Clubhouse with Effie Parks and Bo Bigelow
Aug 10, 2021
The 12 Commandments to guide you when you're starting a rare disease patient advocacy group - With Nasha Fitter and Mike Graglia
Aug 05, 2021
Leading the World Gene Therapy Program for CTNNB1 With Fellow Rare Mama - Špela Miroševič
Jul 29, 2021
Effisode - Your Kids, My Kids - They're All Perfect
Jul 27, 2021
Enabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments
Jul 22, 2021
A Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff
Jul 15, 2021
Effisode - Family Camp, Annoying Brothers, and the Doom of Packing
Jul 13, 2021
Mental Health and living with chronic stress with Rare Disease Dad and Psychologist, Al Freedman, Ph.D
Jul 08, 2021
Discovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle
Jul 01, 2021
Effisode - Heatwaves and a Happy Birthday
Jun 29, 2021
Living with Persistent Uncertainty without a Rare Disease Diagnosis with Meghan Halley
Jun 24, 2021
A Rare Collection - Superheroes
Jun 17, 2021
Effisode - Making Cents of it All
Jun 15, 2021
Why a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig
Jun 10, 2021
Helping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward
Jun 03, 2021
Effisode - Putting the Play in Playground with DadVocate - Casey Parks
Jun 01, 2021
Relief and Inspiration for Mothers of Children with Rare Diseases with Angel Aid Cares Founder - Cristol O'Loughlin
May 27, 2021
Advocates Come in Small Packages - My Life with Blau Syndrome with Keira Howell
May 20, 2021
Effisode - Unexpected Moments in the Stairwell
May 18, 2021
Rare Disease - The Ultimate Special Teams with Uplifting Athletes with Rob Long
May 13, 2021
Rare Disease Adoption with Josh and Monica Poynter
May 06, 2021
Effisode - Empathy Puts Some Pep in Your Step
May 04, 2021
Rare Disease and Grief - Its Ok That You're Not Ok with Megan Devine
Apr 29, 2021
Creating Space for Mental Health for Men Living with Rare Diseases with David Ross
Apr 22, 2021
Effisode - Adventures in the Grocery Store
Apr 20, 2021
Media with a Mission with Believe Limited CEO Patrick James Lynch
Apr 15, 2021
Top Tips on Advocating For Your Child with Momvocate Kara Karlson
Apr 08, 2021
Effisode - Nacho, Nacho Man
Apr 06, 2021
AllStripes - Jump Start New Research for Your Rare Disease with Caitlin Nichols
Apr 01, 2021
Rare Mom Madeline Cheney - The Rare Life Podcast
Mar 25, 2021
Effisode - An Advocate's Elevator Pitch
Mar 23, 2021
Rare Disease Mom Chat with Mariah Gillaspie - Lightning and Love Foundation
Mar 18, 2021
David Solomon - CEO of Pharnext - A Biopharmaceutical Company
Mar 11, 2021
Effisode - The Friendship Circle - Lilly and Ford
Mar 09, 2021
The Importance of Early Intervention with Kindering CEO Lisa Greenwald
Mar 04, 2021
Accelerating Clinical Research - Harsha Rajasimha, Founder and CEO of Jeeva Informatics
Feb 25, 2021
Effisode - Show Your Stripes With Us This Rare Disease Day
Feb 23, 2021
Cure VCP With Rare Disease Trailblazer - Nathan Peck
Feb 18, 2021
Ben's Friends A Rare Disease Social and Support Platform with Ben Munoz
Feb 11, 2021
Effisode - A Child's Imagination
Feb 09, 2021
Connecting the Dots From Patients to Researchers with Jason Colquitt - CEO of Across Healthcare
Feb 04, 2021
Hippotherapy and Adaptive Riding with Little Bit Therapeutic Riding Center
Jan 28, 2021
Effisode - Growth and Smash Cakes
Jan 26, 2021
Rare Mama - Nikki McIntosh - Navigating Life with Rare
Jan 21, 2021
Beginners Guide to Rare Disease - Anecdotes For Those Early Days of Diagnosis with Daniel DeFabio
Jan 14, 2021
Effisode - Never Underestimate the Determination of Your Child
Jan 12, 2021
Seth Rotberg Founder of Our Odyssey and His Mental Health Surrounding a Huntington’s Disease Diagnosis
Jan 07, 2021
The Life of an Angel Diagnosed with Blau Syndrome with Cheryl-Lynn Townsin
Dec 31, 2020
Effisode - The Magic of Christmas
Dec 29, 2020
Cookies4Cures with Dana Perella
Dec 24, 2020
The Glass Child - Being a Sibling to My Rare Disease Sisters with Madison McLaughlin
Dec 17, 2020
Effisode - Family Dinner
Dec 15, 2020
Pediatric Occupational Therapy with OT4Lyfe - Sarah Putt
Dec 10, 2020
Effisode - Caregiver Personal Trainer Wanted
Dec 01, 2020
Turkey Soup for the Soul
Nov 26, 2020
Effisode - Out with the Ick
Nov 17, 2020
Effisode - Friendship, Inclusion, and Tough Conversations
Nov 03, 2020
Living With Chronic Pain - International Pain Foundation President Barby Ingle
Oct 22, 2020
Effisode - Making Friends and Talking About Differences
Oct 20, 2020
Effisode - Merch, Napa Center, and Beach Adventures
Oct 06, 2020
Reflecting on 50 Episodes with Effie and Casey
Oct 01, 2020
Thanatophoric Skeletal Dysplasia with Ashequka Lacey
Sep 24, 2020
Fake It Til You Make It - Public Speaking, Road Trips and Intensive Therapy
Sep 22, 2020
What is Chronically Surviving with Marcelle Longlade
Sep 17, 2020
Ciitizen - Take Control of Your Own Medical Records and Advance Research with Nasha Fitter
Sep 10, 2020
School Busses, Road Trips and Friendship
Sep 08, 2020
A Family Plagued with Rare Genetic Disease, Adrenoleukodystrophy with Diane Kane
Sep 03, 2020
Two Disabled Dudes - Kyle Bryant and Sean Baumstark
Aug 27, 2020
Rare Together, Watch Together - Film Selections from The Disorder Channel in Partnership with Global Genes
Aug 26, 2020
Effisode - Let Me Tell You About My Big Brother
Aug 25, 2020
A Mother's Crusade to Find a Cure for Her Son - Amber Freed, Founder and CEO, SLC6A1 Connect
Aug 20, 2020
David Fajgenbaum - Chasing My Cure - A Doctor's Race to Turn Hope into Action
Aug 13, 2020
Effisode 001
Aug 11, 2020
WSU ROAR - Responsibility, Opportunities, Advocacy and Respect with Lisa Henniger
Aug 06, 2020
Time is Brain - SynGap Research Fund with Mike Graglia
Jul 30, 2020
Bonus Episode - Usher Syndrome Type III with Eleanor Griffith from Grey Genetics
Jul 27, 2020
Physical and Emotional Well-Being for the Caregiver with Tyra Skibington
Jul 23, 2020
Next Steps - A Journey Through CRPS to an Above the Knee Amputee with Whitney Lavender
Jul 16, 2020
Rare Like Us with Taylor Kane
Jul 09, 2020
Founder of LakiKid - Sensory Tools for Home and Classroom with Jason Hsieh
Jul 02, 2020
Anna Laurent on Alagille Syndrome and Her Road to Advocacy
Jun 25, 2020
Sage Graves - Estate Planning, Guardianship, Special Needs Trusts
Jun 18, 2020
The Ladies Behind the Edits
Jun 11, 2020
Loving Large: A Mother's Rare Disease Memoir With Patti Hall
Jun 08, 2020
In Loving Memory of Lucas DeFabio
Jun 07, 2020
Beyond Quarantine: Acceptance, Empathy, and a Better Normal
May 28, 2020
Quarantine - What We're Missing, What We're Not, and What We Hope Sticks Around
May 21, 2020
Trust Your Instincts; An Early Intervention Can Save Your Life
May 14, 2020
Put Your Own Oxygen Mask On First
May 07, 2020
Rare Disease Trailblazer and Co-Founder of Disorder - The Rare Disease Film Festival
Apr 30, 2020
Therapy Check-In With Rose Reif
Apr 23, 2020
How Our Rare Kids Can Shape Us
Apr 16, 2020
A Grandfather's Story of Guardianship, Caregiving and Advocacy
Apr 09, 2020
Choosing Hope
Apr 02, 2020
Mental Health and Coping During Covid-19
Mar 26, 2020
School Closures and FAPE
Mar 19, 2020
A Healthier Healthcare For All
Mar 12, 2020
Morgan's Wonderland
Mar 05, 2020
Neena Nizar and the Jansen's Foundation
Feb 27, 2020
Distressed Genes Aren't Just A Fashion Statement
Feb 20, 2020
The Value of Genetic Counselors
Feb 13, 2020
The Lucky Few
Feb 06, 2020
Films and Fatherhood
Jan 30, 2020
A Fellow CTNNB1 Mama
Jan 23, 2020
Sibling Support
Jan 16, 2020
My Favorite Pair of Genes
Jan 09, 2020
Rollin' With Spina Bifida
Jan 02, 2020
My Pfeiffer Pfamily
Dec 26, 2019
The Fathers Network
Dec 19, 2019
Heartism
Dec 12, 2019
A Little Love
Dec 05, 2019
The Dadurday Chronicles
Nov 28, 2019
It's Your Party, and I'll Cry If I Want To
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Effie
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