Latest Asepodcast Podcast Episodes
Episode 228 - Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breakthroughs, and the Every Cure Initiative with Dr. David Fajgenbaum
Once Upon A Gene - May 09, 2024 11:00 - 51 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 228 Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breathroughs, and the Every Cure Initiative with Dr. David Fajgenbaum Dr. David Fajgenbaum is is a groundbreaking physician-scientist, disease hunter, speaker, and national bestselli...
The Cost of Doing Business
Anti Social Experience - May 05, 2024 21:00 - 23 minutes ★★★★★ - 5 ratings#antisocialexperience #business #costofdoingbusiness There are many ways to do business, not all work long term. Live Sundays @ 3PM EST https://www.youtube.com/channel/UCw_CAqHW81X3dNX33w-okjQ https://www.youtube.com/c/nicckennedy https://antisocialexperience.com/ https://www.facebook.co...
Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska
Once Upon A Gene - April 25, 2024 11:00 - 51 minutes ★★★★★ - 251 ratingsConnect with Kara, host of The Special Needs Mom Podcast: Instagram: https://www.instagram.com/thespecialneedsmompodcast/ Website: https://www.kararyska.com/ Coaching Opportunities Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me Join The Special Needs Mom Podcast Comm...
Title Holders Anonymous
Anti Social Experience - April 21, 2024 21:00 - 27 minutes ★★★★★ - 5 ratings#antisocialexperience #titles #forlease #podcast One step forward, how many back incoming? Live Sundays @ 3PM EST https://www.youtube.com/channel/UCw_CAqHW81X3dNX33w-okjQ https://www.youtube.com/c/nicckennedy https://antisocialexperience.com/ https://www.facebook.com/aseliveshow an...
From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
Once Upon A Gene - April 18, 2024 11:00 - 45 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 226 From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland Jillian and Scott Copeland are husband and wife, advocates and pioneers who have transformed their perso...
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
Once Upon A Gene - April 11, 2024 15:42 - 46 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 225 The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman Noah Siedman was a big brother to Ben who had Sanfilippo Syndrome, a devastating disease that leads to childhood dementia an...
Chin Up Always
Anti Social Experience - April 07, 2024 21:00 - 24 minutes ★★★★★ - 5 ratingsantisocialexperience #chinup #suckitup Remembering the old times. Even if they werent the best. Live Sundays @ 3PM EST https://www.youtube.com/channel/UCw_CAqHW81X3dNX33w-okjQ https://www.youtube.com/c/nicckennedy https://antisocialexperience.com/ https://www.facebook.com/aseliveshow...
The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed
Once Upon A Gene - April 04, 2024 11:00 - 28 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 224 The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed Advocate, rare mom and Founder of SLC6A1 Connect, Amber Freed joins me to talk about ICD-10 codes— the frustrations, the battles, and the common-sense changes we're fightin...
Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio
Once Upon A Gene - March 28, 2024 11:00 - 51 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 223 Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio Ilene Miller and Christina SanInocencio are advocates doing groundbreaking work at the Rare Epilepsy Network (REN), a volunteer network of epilepsy organizations banding together, sharing resea...
Krabbe Disease with Kasey Feldt
Once Upon A Gene - March 21, 2024 11:00 - 29 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 222 Krabbe Disease with Kasey Feldt Kasey Feldt is the mom of two- one year old Lukas and Dawson, who passed away from Krabbe disease. Kasey has become a passionate and unstoppable advocate, not only advocating for Krabbe disease, but also the newborn screening system ...
The Grandest Scale of Entertainment
Anti Social Experience - March 17, 2024 21:00 - 25 minutes ★★★★★ - 5 ratings#antisocialexperience #floridaman #floridamangames #floridamaam The Grandest Scale, stupidity or the other thing? Live Sundays @ 3PM EST https://www.youtube.com/channel/UCw_CAqHW81X3dNX33w-okjQ https://www.youtube.com/c/nicckennedy https://antisocialexperience.com/ https://www.facebo...
BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay
Once Upon A Gene - March 14, 2024 11:00 - 38 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 221 BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay I'm joined by Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay to discuss BeginNGS, a ground-breaking initiative that stands at the forefront o...
What Do You Do For The Redux
Anti Social Experience - March 10, 2024 21:00 - 22 minutes ★★★★★ - 5 ratings#antisocialexperience #redux #mistakesweremade Revisiting some blunders of the past, unbelievably not done by us! Live Sundays @ 3PM EST https://www.youtube.com/channel/UCw_CAqHW81X3dNX33w-okjQ https://www.youtube.com/c/nicckennedy https://antisocialexperience.com/ https://www.facebo...
A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action
Once Upon A Gene - March 07, 2024 12:00 - 17 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 220 A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a comm...
Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini
Once Upon A Gene - February 29, 2024 12:00 - 43 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 219 Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini Amanda Pichini is a genetic counselor from Genomics England, here to share their initiatives and mission. EPISODE HIGHLIGHTS What is your role at Genomics England and how did your career devel...
James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child
Once Upon A Gene - February 22, 2024 12:00 - 53 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 218 James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child James Robinson is a dad and the author of More Than We Expected: Five Years With a Remarkable Child, a deeply moving book and a testament to the strength found in vulnerability, th...
Just Like Phoenix Not Arizona
Anti Social Experience - February 18, 2024 22:00 - 22 minutes ★★★★★ - 5 ratings#antisocialexperience #fromtheashes #phoenix # When one door closes, so are the rest! Live Sundays @ 3PM EST https://www.youtube.com/channel/UCw_CAqHW81X3dNX33w-okjQ https://www.youtube.com/c/nicckennedy https://antisocialexperience.com/ https://www.facebook.com/aseliveshow antisoc...
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
Once Upon A Gene - February 15, 2024 13:39 - 51 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 184 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 Janie Reade is an author and mom to three adult sons, one with a severe neurodevelopmental disorder caused by a m...
The Bad The Old and The Broken
Anti Social Experience - February 11, 2024 22:00 - 28 minutes ★★★★★ - 5 ratings#antisocialexperience #middleaged #almost #daylatedollarshort #outofgas #nomorego Middle aged, middle of the road, and no more go, what else did you expect. Live Sundays @ 3PM EST https://www.youtube.com/channel/UCw_CAqHW81X3dNX33w-okjQ https://www.youtube.com/c/nicckennedy https://antis...
Uniting Science and Hope - COMBINEDBrain and it's Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell
Once Upon A Gene - February 08, 2024 12:00 - 55 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 217 Uniting Science and Hope - COMBINEDBrain and its Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell Terry Jo Bichell is a rare mom, neuroscientist and the founder of COMBINEDBrain, a nonprofit organization ...
The Everr Moving Bar
Anti Social Experience - February 04, 2024 22:00 - 21 minutes ★★★★★ - 5 ratings#antisocialexperience #hardwork #nosleep #evolving The work involved in a hobby, or a career. Live Sundays @ 3PM EST https://www.youtube.com/channel/UCw_CAqHW81X3dNX33w-okjQ https://www.youtube.com/c/nicckennedy https://antisocialexperience.com/ https://www.facebook.com/aseliveshow ...
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
Once Upon A Gene - February 01, 2024 12:00 - 39 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 201 A Rare Collection - Five Advocacy Aces Share Their Conference Commandments EPISODE HIGHLIGHTS Melissa Hioco, STXBP1 DO: Offer a family hospitality room where parents can see the broadcast and stay involved in the conference. Provide sibling spaces and make them f...
Pay to Stay
Anti Social Experience - January 28, 2024 20:07 - 25 minutes ★★★★★ - 5 ratings#antisocialexperience #promotion #views #growth Are others taking interest in growing your show, sometimes more than you may be yourself? Live Sundays @ 3PM EST https://www.youtube.com/channel/UCw_CAqHW81X3dNX33w-okjQ https://www.youtube.com/c/nicckennedy https://antisocialexperience.com...
Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay
Once Upon A Gene - January 25, 2024 12:00 - 43 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 216 Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay Matt Hay has a disorder called Neurofibromatosis type 2 (NF2) and how he has more than overcome the challenges that came with it— he has thri...
Ball And Chain Tuners
Anti Social Experience - January 21, 2024 22:00 - 23 minutes ★★★★★ - 5 ratingsantisocialexperience #ballandchain #breakaway #different #doit Breaking away from the everyday ball and chain. Live Sundays @ 3PM EST https://www.youtube.com/channel/UCw_CAqHW81X3dNX33w-okjQ https://www.youtube.com/c/nicckennedy https://antisocialexperience.com/ https://www.facebook.c...
Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford
Once Upon A Gene - January 18, 2024 12:00 - 34 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 215 Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford Emily Crawford left her lifelong dream job of being a teacher to surrender to the demands of care-giving. She joins me to discuss identity loss an...
A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari
Once Upon A Gene - January 11, 2024 12:00 - 41 minutes ★★★★★ - 251 ratingsONCE UPON A GENE - EPISODE 214 A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari Anne Rugari is an advocating powerhouse, an author of two children's books, a mom, and two of her children have passed away from Krabbe disease. She joins us to sha...
Finding Strength In Every Step
Once Upon A Gene - January 08, 2024 12:00 - 17 minutes ★★★★★ - 251 ratingsAs 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...
2023 White Knuckle Awards
Anti Social Experience - January 07, 2024 22:30 - 26 minutes ★★★★★ - 5 ratings#antisocialexperience #newyearseve #whiteknuckle #holdon And the award goes to...? Live Sundays @ 3PM EST https://www.youtube.com/channel/UCw_CAqHW81X3dNX33w-okjQ https://www.youtube.com/c/nicckennedy https://antisocialexperience.com/ https://www.facebook.com/aseliveshow [email protected] ...
Not Full HD Christmas
Anti Social Experience - December 31, 2023 22:00 - 28 minutes ★★★★★ - 5 ratings#antisocialexperience #christmaseve #notfullhd #hdchristmas To FHD or not FHD, that is the question? Live Sundays @ 3PM EST https://www.youtube.com/channel/UCw_CAqHW81X3dNX33w-okjQ https://www.youtube.com/c/nicckennedy https://antisocialexperience.com/ https://www.facebook.com/aseliv...
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