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 - Friendship, Inclusion, and Tough Con...
Intro music by Scott Holmes
8 min
277
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
278
Effisode - Making Friends and Talking About Dif...
Music provided by Scott Holmes
6 min
279
Effisode - Merch, Napa Center, and Beach Advent...
Into music by Scott Holmes
6 min
280
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
281
Thanatophoric Skeletal Dysplasia with Ashequka ...
ONCE UPON A GENE - EPISODE 049
35 min
282
Fake It Til You Make It - Public Speaking, Road...
Intro music provided by Scott Holmes
4 min
283
What is Chronically Surviving with Marcelle Lon...
ONCE UPON A GENE - EPISODE 048
33 min
284
Ciitizen - Take Control of Your Own Medical Rec...
ONCE UPON A GENE - EPISODE 047
30 min
285
School Busses, Road Trips and Friendship
Intro music provided by Scott Holmes
4 min
286
A Family Plagued with Rare Genetic Disease, Adr...
ONCE UPON A GENE - EPISODE 046
27 min
287
Two Disabled Dudes - Kyle Bryant and Sean Baums...
ONCE UPON A GENE - EPISODE 045
36 min
288
Rare Together, Watch Together - Film Selections...
ONCE UPON A GENE - BONUS EPISODE
27 min
289
Effisode - Let Me Tell You About My Big Brother
4 min
290
A Mother's Crusade to Find a Cure for Her Son -...
ONCE UPON A GENE - EPISODE 044
42 min
291
David Fajgenbaum - Chasing My Cure - A Doctor's...
ONCE UPON A GENE - EPISODE 043
53 min
292
Effisode 001
7 min
293
WSU ROAR - Responsibility, Opportunities, Advoc...
ONCE UPON A GENE - EPISODE 042
30 min
294
Time is Brain - SynGap Research Fund with Mike ...
ONCE UPON A GENE - EPISODE 041
35 min
295
Bonus Episode - Usher Syndrome Type III with El...
54 min
296
Physical and Emotional Well-Being for the Careg...
ONCE UPON A GENE - EPISODE 040
46 min
297
Next Steps - A Journey Through CRPS to an Above...
ONCE UPON A GENE - EPISODE 039
34 min
298
Rare Like Us with Taylor Kane
ONCE UPON A GENE - EPISODE 038
37 min
299
Founder of LakiKid - Sensory Tools for Home and...
ONCE UPON A GENE - EPISODE 037
28 min
300
Anna Laurent on Alagille Syndrome and Her Road ...
ONCE UPON A GENE - EPISODE 036
38 min