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
Ben's Friends A Rare Disease Social and Support...
ONCE UPON A GENE - EPISODE 069
21 min
277
Effisode - A Child's Imagination
Intro music by Scott Holmes
4 min
278
Connecting the Dots From Patients to Researcher...
ONCE UPON A GENE - EPISODE 068
25 min
279
Hippotherapy and Adaptive Riding with Little Bi...
ONCE UPON A GENE - EPISODE 067
26 min
280
Effisode - Growth and Smash Cakes
Intro music by Scott Holmes
6 min
281
Rare Mama - Nikki McIntosh - Navigating Life wi...
ONCE UPON A GENE - EPISODE 066
25 min
282
Beginners Guide to Rare Disease - Anecdotes For...
ONCE UPON A GENE - EPISODE 065
45 min
283
Effisode - Never Underestimate the Determinatio...
Intro music by Scott Holmes
10 min
284
Seth Rotberg Founder of Our Odyssey and His Men...
ONCE UPON A GENE - EPISODE 064
37 min
285
The Life of an Angel Diagnosed with Blau Syndro...
ONCE UPON A GENE - EPISODE 063
52 min
286
Effisode - The Magic of Christmas
Music provided by Scott Holmes
7 min
287
Cookies4Cures with Dana Perella
ONCE UPON A GENE - EPISODE 062
19 min
288
The Glass Child - Being a Sibling to My Rare Di...
ONCE UPON A GENE - EPISODE 061
53 min
289
Effisode - Family Dinner
Music provided by Scott Holmes
7 min
290
Pediatric Occupational Therapy with OT4Lyfe - S...
ONCE UPON A GENE - EPISODE 060
51 min
291
Effisode - Caregiver Personal Trainer Wanted
Intro music by Scott Holmes
7 min
292
Turkey Soup for the Soul
ONCE UPON A GENE - EPISODE 058
41 min
293
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
294
Effisode - Out with the Ick
Intro music by Scott Holmes
5 min
295
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
296
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
297
Effisode - Friendship, Inclusion, and Tough Con...
Intro music by Scott Holmes
8 min
298
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
299
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
300
Effisode - Making Friends and Talking About Dif...
Music provided by Scott Holmes
6 min