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.
Episodes
ONCE UPON A GENE - EPISODE 133
The Unique Expertise of a Genetic Counselor - Helping Rare Disease Individuals and Families Navigate Through Complex Emotions and Circumstances Like Guilt, Grief, and Shame with Mary-Frances Garber
Mary-Frances Garber is a Genetic Counselor who has a private practice where she offers support to patients and families affected by a rare disease diagnosis. We discuss emotional responses to grief, shame ...
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October 17, 2024 • 23 mins
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October 10, 2024 • 17 mins
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ONCE UPON A GENE - EPISODE 245
Finding Strength in Friendship - Building In-Person Connections for Special Needs Moms with Colorado Mama Tribe - Mariah Gillaspie
Mariah Gillaspie is the mom of Abby and Emma, who both have a genetic condition called THAP12, and they're the only known patients in the world. Mariah is the Founder of Lightning and Love and an active rare disease advocate. Most recently, she's shifted her focus to comm...
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September 19, 2024 • 24 mins
A collection of voicemails from rare disease parents who relate to you situation.
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September 12, 2024 • 32 mins
ONCE UPON A GENE - EPISODE 243
Chasing Glimmers - Electric Love Disability Retreats
Chasing Glimmers is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging the rare disease journey can be, but we also believe in the incredible power of connection, bravery and positivity. We're sharing inspiring stories from the community, life lessons we've learned and ex...
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September 5, 2024 • 16 mins
ONCE UPON A GENE - EPISODE 242
Choosing Friends as a Rare Disease Parent - Building a Supportive Circle with Genuine Connections
I've been seeing so many online conversations around friendships lately and we've all experienced a ghost ship of friends or people who disappeared or didn't show up for us as we came into the rare disease world. It's an important topic to touch on since so many of us face these friendship challenges. Wh...
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August 29, 2024 • 31 mins
ONCE UPON A GENE - EPISODE 241
Chasing Glimmers - What's Glimmering with Katie Lloyd
Chasing Glimmers, is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging the rare disease journey can be, but we also believe in the incredible power of connection, bravery and positivity. We'll share inspiring stories from the community, life lessons we've learned and ex...
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August 22, 2024 • 34 mins
ONCE UPON A GENE - EPISODE 240
A Mother's Mission - Project Baby Lion, ASO Therapy and the TNP02 Foundation with Yiwei She
Yiwei She is a powerhouse mom to little Leo, the Founder of the TNP02 Foundation, a remarkable and brilliant advocate, and she's nothing short of extraordinary.
EPISODE HIGHLIGHTS
Can you tell us about Leo's diagnostic journey and how that inspired you to start the TNP02 Foundation?
Leo's head circumference...
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ONCE UPON A GENE - EPISODE 239
Navigating Physical and Emotional Stress and Noticing Where It Shows Up In Our Body As A Rare Disease Caregiver - With Christy Foster
Joining me today is my sister, Christy Foster. We're talking about caregiver stress, stress-related pain, how and why it shows up, and how to cope.
EPISODE HIGHLIGHTS
How does chronic stress affect us physically?
The muscle tissue is our body represents our emotional...
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August 8, 2024 • 9 mins
ONCE UPON A GENE - EPISODE 238
Where the Glimmers Can Surface
We were at our beloved park— the one we helped renovate to be inclusive and accessible, then made a trip to a nearby grocery store nearby. Ford loves automatic doors. The grocery store has the usual automatic doors at the entrance, but also has big black swinging doors at the rear of the store, where the employees pass back and forth as they restock the store. It was a ...
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August 1, 2024 • 6 mins
ONCE UPON A GENE - EPISODE 237
Join Us for The Global Genes Week In Rare
The 2024 Global Genes Week in RARE is happening in Kansas City, MO from September 25-28th. This is a powerhouse week packed with three incredible advocacy events that you can't miss— the Rare Equity Forum, the Rare Advocacy Summit and the Rare Champions of Hope Awards ceremony. Why attend? This will be four days of community, capacity building, empowering rar...
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July 25, 2024 • 30 mins
ONCE UPON A GENE - EPISODE 236
Rare Disease Research - Insights from Charles River Labs with Roxana Redis and David Fischer
Charles River Labs is a rare disease research and drug development powerhouse and their work leads to life-changing treatments. I'm joined by Roxana Redis and David Fischer to talk about Charles River Labs’ support, rare disease research and how patient advocacy organizations can team up with them to make a b...
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ONCE UPON A GENE - EPISODE 235
Rare Connections in NMOSD (Neuromyelitis Optics) - Finding Strength in Community and the Power in Asking for Help with Craig Klein
My guest, Craig Klein, has been living with Neuromyelitis Optics Spectrum Disorder (NMOSD) for 8 years. He shares his challenges, strengths and about his journey of resilience.
EPISODE HIGHLIGHTS
What has your diagnostic journey been like?
The first few years were diff...
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ONCE UPON A GENE - EPISODE 234
Chasing Glimmers - Illuminating Hope and Lessons in the Rare Disease Journey - Finding Glimmers for a Happier, Healthier Life with Katie Lloyd
This new series, Chasing Glimmers, is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging the rare disease journey can be, but we also believe in the incredible power of connection, b...
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ONCE UPON A GENE - EPISODE 233
Are You Worried About Your Baby's Development - Enroll in Project FIND-OUT - You May Qualify for Free Whole Genome Sequencing
LINKS AND RESOURCES MENTIONED
Project Findout
https://projectfindout.org/
CONNECT WITH EFFIE PARKS
Website
https://effieparks.com/
Twitter
https://twitter.com/OnceUponAGene
Instagram
https://www.instagram.com/onceuponagene.podcast/?hl=en
Built Ford Tough Facebook Group
https:...
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ONCE UPON A GENE - EPISODE 232
Understanding Genetic Counseling - Essential Insights for Parents – Navigating Appointments, Referrals, Testing, and Insurance with Expert Abby Turnwald MS CGC
Abby Turnwald is a genetic counselor here to talk about genetic testing and the crucial role genetic counselors play in guiding families through the complexity of genetic testing and understanding the results. We'll discuss what parents can ex...
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ONCE UPON A GENE - EPISODE 230
Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick
Nikki Stusick is the mom of a child with an initial VUS diagnosis and then a different pathogenic diagnosis. We talk about the complexities of balancing advocacy work, family life, when to choose one over the other and when to take a break.
EPISODE HIGHLIGHTS
Can you tell us about...
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ONCE UPON A GENE - EPISODE 229
Uniting Strengths - Rare Disease Collaboration on a Shared Patient Registry Through Sanford Cords with Cure Mito and Hope for PDCD Leaders Frances Muenzer Pimentel and Sophia Zilber
Frances Muenzer Pimentel and Sophia Zilber have united the Hope for PDCD Foundation and the Cure Mito Foundation to launch a global joint registry and they're here to share about the collaboration.
EPISODE HIGHLIGHTS
Wh...
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