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

Society & Culture
Kids & Family
Parenting
276
The Life of an Angel Diagnosed with Blau Syndro...
ONCE UPON A GENE - EPISODE 063
52 min
277
Effisode - The Magic of Christmas
Music provided by Scott Holmes
7 min
278
Cookies4Cures with Dana Perella
ONCE UPON A GENE - EPISODE 062
19 min
279
The Glass Child - Being a Sibling to My Rare Di...
ONCE UPON A GENE - EPISODE 061
53 min
280
Effisode - Family Dinner
Music provided by Scott Holmes
7 min
281
Pediatric Occupational Therapy with OT4Lyfe - S...
ONCE UPON A GENE - EPISODE 060
51 min
282
Effisode - Caregiver Personal Trainer Wanted
Intro music by Scott Holmes
7 min
283
Turkey Soup for the Soul
ONCE UPON A GENE - EPISODE 058
41 min
284
SLC13A5 - 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 TESS Research Foundation, a nonprofit organization on a mission to find better treatment...
47 min
285
Effisode - Out with the Ick
Intro music by Scott Holmes
5 min
286
Rare Leader - Patricia Weltin, CEO, Beyond the ...
ONCE UPON A GENE - EPISODE 056 Rare Leader - Patricia Weltin, CEO, Beyond the Diagnosis Patricia Weltin shares her organization, Beyond the Diagnosis, an art exhibit with a focus on portraits of rare disease. Their goal is to put a face to all rare...
31 min
287
One Woman’s Kindness Sparks a Neighborhood To D...
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 Seattle. It's safe, quiet and clean and it's only missing an inclusive playground. I don't...
20 min
288
Effisode - Friendship, Inclusion, and Tough Con...
Intro music by Scott Holmes
8 min
289
RARE - A Brand With A Purpose With Theresa Thom...
ONCE UPON A GENE - EPISODE 054 RARE. — A Brand with a Purpose: Theresa Thomas and Kristine Hoestermann Theresa Thomas and Kristine Hoestermann nurtured their own outlets of blogging and art and found each other online through the power of a hashtag....
29 min
290
Living With Chronic Pain - International Pain F...
ONCE UPON A GENE - EPISODE 053 Living with Chronic Pain - International Pain Foundation President Barby Ingle is a fierce advocate, the President of the , a chronic pain educator and advocate, motivational speaker, Amazon best-selling author and...
38 min
291
Effisode - Making Friends and Talking About Dif...
Music provided by Scott Holmes
6 min
292
Adam Johnson - Rare Disease Dad on Mitochondria...
ONCE UPON A GENE - EPISODE 052 Adam Johnson - Rare Disease Dad on Mitochondrial Myopathy and Owning Your Story Adam “DadVocate” Johnson is a dad, diagnosed with Mitochondrial Myopathy. He blogs about his rare disease story, grief and experience on...
42 min
293
Truncus Arteriosus - A Rare Form of Congenital ...
ONCE UPON A GENE - EPISODE 051 Truncus Arteriosus - A Rare Form of Congenital Heart Disease with Sonja Voice Charlotte was born with a rare form of congenital heart disease called Truncus Arteriosus. After Charlotte was born, her mom, Sonja Voice,...
37 min
294
Effisode - Merch, Napa Center, and Beach Advent...
Into music by Scott Holmes
6 min
295
Reflecting on 50 Episodes with Effie and Casey
ONCE UPON A GENE - EPISODE 050 Reflecting on 50 Episodes with Effie and Casey It's the 50th episode of the Once Upon a Gene podcast and Casey and Effie reflect on their journey, past guests, experiences and the stories that have touched them. EPISODE...
18 min
296
Thanatophoric Skeletal Dysplasia with Ashequka ...
ONCE UPON A GENE - EPISODE 049
35 min
297
Fake It Til You Make It - Public Speaking, Road...
Intro music provided by Scott Holmes
4 min
298
What is Chronically Surviving with Marcelle Lon...
ONCE UPON A GENE - EPISODE 048
33 min
299
Ciitizen - Take Control of Your Own Medical Rec...
ONCE UPON A GENE - EPISODE 047
30 min
300
School Busses, Road Trips and Friendship
Intro music provided by Scott Holmes
4 min