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
Effisode - Caregiver Personal Trainer Wanted
Intro music by Scott Holmes
7 min
277
Turkey Soup for the Soul
ONCE UPON A GENE - EPISODE 058
41 min
278
Effisode - Out with the Ick
Intro music by Scott Holmes
5 min
279
Effisode - Friendship, Inclusion, and Tough Con...
Intro music by Scott Holmes
8 min
280
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
281
Effisode - Making Friends and Talking About Dif...
Music provided by Scott Holmes
6 min
282
Effisode - Merch, Napa Center, and Beach Advent...
Into music by Scott Holmes
6 min
283
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
284
Thanatophoric Skeletal Dysplasia with Ashequka ...
ONCE UPON A GENE - EPISODE 049
35 min
285
Fake It Til You Make It - Public Speaking, Road...
Intro music provided by Scott Holmes
4 min
286
What is Chronically Surviving with Marcelle Lon...
ONCE UPON A GENE - EPISODE 048
33 min
287
Ciitizen - Take Control of Your Own Medical Rec...
ONCE UPON A GENE - EPISODE 047
30 min
288
School Busses, Road Trips and Friendship
Intro music provided by Scott Holmes
4 min
289
A Family Plagued with Rare Genetic Disease, Adr...
ONCE UPON A GENE - EPISODE 046
27 min
290
Two Disabled Dudes - Kyle Bryant and Sean Baums...
ONCE UPON A GENE - EPISODE 045
36 min
291
Rare Together, Watch Together - Film Selections...
ONCE UPON A GENE - BONUS EPISODE
27 min
292
Effisode - Let Me Tell You About My Big Brother
4 min
293
A Mother's Crusade to Find a Cure for Her Son -...
ONCE UPON A GENE - EPISODE 044
42 min
294
David Fajgenbaum - Chasing My Cure - A Doctor's...
ONCE UPON A GENE - EPISODE 043
53 min
295
Effisode 001
7 min
296
WSU ROAR - Responsibility, Opportunities, Advoc...
ONCE UPON A GENE - EPISODE 042
30 min
297
Time is Brain - SynGap Research Fund with Mike ...
ONCE UPON A GENE - EPISODE 041
35 min
298
Bonus Episode - Usher Syndrome Type III with El...
54 min
299
Physical and Emotional Well-Being for the Careg...
ONCE UPON A GENE - EPISODE 040
46 min
300
Next Steps - A Journey Through CRPS to an Above...
ONCE UPON A GENE - EPISODE 039
34 min