Once Upon A Gene

In part 3 of our 4-part series on Caregiver Archetypes, my sister and somatic therapist Christy Foster returns to unpack the Saboteur — the clever inner voice that second-guesses you, overthinks everything, and talks you out of what you actually want and need.

We explore how this archetype shows up for caregivers (especially around time, perfectionism, trusting your gut when doctors gaslight you, asking for help, and feeling “not enough”). You’ll learn how to spot the Saboteur in real time, separate doubt from data, run tiny experiments to rebuild self-trust, and shift from the Scarecrow (who believes he has no brain) into the Magician — the part of you that creates something out of nothing, including time and sovereignty.

This episode is packed with practical language shifts, somatic awareness, and compassionate tools that have literally changed how I show up for myself and Ford.

Welcome to Part 2 of our 4-part Caregiver Archetype series.

In this episode, Effie is joined by somatic therapist Christy Foster to explore the Prostitute Archetype—also known as the Worth/Value archetype.

This pattern asks:
What part of myself am I trading for approval, peace, love, or survival?

For caregivers, this can show up as sacrificing your time, identity, health, and needs just to keep everything going. While it often comes from love, the cost can quietly become too high.

In this conversation, you’ll learn:

This episode is your reminder:
You can care for your child without losing yourself in the process.

Series Note: This is Episode 2 of 4. Next up: The Saboteur Archetype.

In this opening episode of our special 4-part series on Caregiver Archetypes, host Effie Parks welcomes back her sister, Christy Foster, for a heartfelt and refreshingly different conversation. Christy will introduce the Child Archetype—the part of us that longs to belong, dream big, and feel safe… but can also slam the door shut, shout “It’s not fair!”, and feel completely powerless when life gets loud.

It’s a simple, practical language to help caregivers notice their stress patterns in real time and choose kinder next steps. Christy guides listeners through how to spot when your inner Child is activated, how to soothe that part of yourself with compassion, and, most importantly, how to keep it from taking the wheel.

You’ll walk away with:

Whether you’re in the thick of caregiving, navigating big emotions, or simply craving more self-awareness, this episode gives you a compassionate new way to understand yourself when stress hits.

Mentioned in this episode:

This is the first of four episodes exploring different caregiver archetypes.

Stay tuned for Parts 2–4

Episode Description:

Brittni shares the raw season after Jameson’s diagnosis when grief, loneliness, and hopelessness felt all-consuming. She talks about crying herself to sleep, walking through the days in a fog, and the heavy mom guilt she carried. Then she opens up about the slow, beautiful healing that came through daily surrender, faith, weight training, community with other special needs moms, and choosing to notice the “glimmers” of joy with her family.

We talk about what surrender really looked like in her body and her home, how she’s learning to care for herself so she can show up for her kids, the unique bond she shares with Jameson, and why her hope is now anchored in heaven — where she dreams of one day seeing Jameson walking, running, and jumping with a brand-new body.

This episode is full of gentle wisdom, real talk about grief, and encouragement that joy and hope really can return after the darkest days.

Topics Covered:

Connect with Brittni:

If this episode touched you, please share it with another rare disease or special needs parent who needs to hear that they’re not alone — and that hope can come back. 💛

Thanks for listening!

Lana is a mom, software developer, and fierce advocate who created Q-Voice, an AAC system built out of love, frustration, and deep understanding. When her daughter Quinn struggled to connect through traditional speech apps, Lana and her husband decided to build something better—something intuitive, visual, and human.

In this episode, we talk about:

The real-life limitations of traditional AAC systems

How Q-Voice uses GIFs, emojis, and real-world icons to keep learners engaged

Built-in data tracking that actually helps shape speech goals

The AI feature that speeds up sentence formation and keeps communication flowing

Why parent involvement and design simplicity are key to AAC success

Whether you’re a parent, SLP, or educator, this episode is full of hope and practical inspiration for making communication easier—and more fun—for everyone.

Learn more or try Q-Voice: qvoice.app

Follow Lana on Instagram: https://www.instagram.com/tigerishmom/

Follow Q-Voice on Instagram: https://www.instagram.com/qvoice.app/

In this episode of Once Upon a Gene, host Effie Parks welcomes Geraldine Bliss — rare mom, co-founder of CureSHANK, and the powerhouse behind Start Genetic, a new movement empowering families to take control of their genetic testing journey.

Geraldine shares her decades-long experience as mom to Charles, a 27-year-old living with Phelan-McDermid syndrome, and how one test unlocked a world of understanding, care, and connection. Together, Effie and Geraldine dig into the real-world impact of genetic testing — what to ask for, when to push for answers, and how knowing the cause changes everything.

They cover:

🧬 When and how to pursue genetic testing or re-testing

🧩 How a diagnosis can transform care, support, and research

🚫 Common myths and roadblocks that stop families from getting tested

🧠 Why “not knowing” limits treatment options — and what to do about it

💪 Action steps and resources you can use today

Effie and Geraldine leave listeners with a clear message: You don’t have to wait for the system to hand you answers. You can start genetic.

✨ Resources Mentioned:

Start Genetic

CureSHANK

Phelan-McDermid Syndrome Foundation

💬 Quote from the Episode:

In this episode of Once Upon a Gene, Effie sits down with Dr. Maya Gosztyla

Effie and Maya talk about:

What organoids are and why they matter for rare diseases

How organoids could replace traditional mouse models, speeding research while reducing reliance on animal studies

The potential for organoids to accelerate drug development and get treatments to clinical trials faster

How these tiny models might unlock personalized medicine, tailored to each child’s unique mutation

Why this shift from “watching and waiting” to testing and acting could be transformative for families

Maya brings not only her scientific brilliance but also her heart and connection to the rare disease mission. This conversation will expand your sense of what’s possible for the future of research, treatment, and hope for our kids.

This episode of Once Upon a Gene is a little like a cafeteria tray - pick what feeds you and leave what doesn't.

Chatting with the zesty, vivacious, and wildly insightful Emma Nadler - psychotherapist, author of The Unlikely Village of Eden, rare mom, and truth teller. Emma has a way of cracking you open with honesty and tenderness, then making you laugh through the tears.

We talk about:

How storytelling helps us heal and connect

Grief, Joy, Love - all living side by side

The long-haul reality of caregiving and what it takes to keep going

Friendship, community, and the absurdities that keep us human

Finding meaning when life reroutes in unexpected ways

Emma’s memoir, The Unlikely Village of Eden, is one of those rare books that’s both heart-shattering and heart-rebuilding, leaving you changed in the best way.

📚 Grab Emma’s book
📝 Follow her writing on Substack.

📝 Follow her on Instagram

In this conversation, Wendy Chung discusses the evolution of understanding genetic conditions, particularly in relation to autism, and the role of Simons Searchlight in patient advocacy. She emphasizes the importance of community support, global inclusion, and the hope for future therapies. The conversation highlights the significance of family connections and the collective effort in advancing research and treatment options for neurodevelopmental disorders.takeaways

ONCE UPON A GENE - EPISODE 100

A Rare Collection- Because of You with Kyle Bryant, Jennifer Siedman, Liz Morris, and Ashley Fortney Point

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 common theme. Kyle Bryant, Jennifer Sideman, Liz Morris, and Ashley Fortney Point share stories of rare disease.

EPISODE HIGHLIGHTS

Kyle Bryant, Living with Friedreich’s Ataxia

Kyle was diagnosed with Friedreich’s Ataxia at age 17. It's a disease that affects balance and coordination and has symptoms of scoliosis, vision loss, hearing loss and life-shortening heart complications. At the time he was diagnosed, he ignored that his future would be much different than what he'd imagined. After a few years, he wanted to take a cross-country bike ride. Kyle reads a page from his book about how he convinced his parents to join him.

Jennifer Siedman, Mother to Ben

Jennifer loved a little boy with a rare disease called Sanfilippo Syndrome. That boy graced this Earth for 17 years with a big lion roar of a laugh and a gentle heart. He loved farms, tractors, baseball and chocolate donuts. His quiet determination convinced a researcher to pursue a treatment and because of it, there are other children today with Sanfilippo Syndrome who's future might look different than his. Jennifer knows who she is today because she was Ben's mother. Jennifer shares a story of her mother-in-law who, through her own determination, modeled the skills she would need to be the best mother and advocate she could be to Ben. 

Liz Morris, Mother to Colson

The Pacific Northwest is abundantly beautiful. Seattle's true appeal is in it's wild spaces. Carkeek Park in northern Seattle is one of Liz's favorites with organic healing powers she needs. Trails lead through the lush woods, there's an expansive shoreline with built-in driftwood seating and open green hills overlooking the sea and mountains. Liz and her husband sat on the beach at Carkeek Park on a hazy August evening in 2016 and talked of their future. They talked of the future they wanted for their future child, which Liz was six months pregnant with. Colson was born in October 2016. He was impacted by mitochondrial disease, a genetic disorder that compromised his body's ability to turn food into energy. Liz shares a story of living with enough.

Ashley Fortney, Mother to Davis

In 2014, Ashley welcomed her son Davis into the world after a difficult pregnancy filled with many hospitalizations and much worry. From the start, the doctors thought there might be something different about Davis. Davis was diagnosed with Koolen-de Vries syndrome at age 7, but he's continued to grow, learn and prove that nothing can stop him. Ashley shares all the ways that Davis has helped the family grow and find support from others in the community and all the ways he makes the world a better place.

TUNE INTO THE ONCE UPON A GENE PODCAST

⁠Spotify⁠

⁠https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7⁠

⁠Apple Podcasts⁠

⁠https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347⁠

⁠Stitcher⁠

⁠https://www.stitcher.com/podcast/once-upon-a-gene⁠

⁠Overcast⁠

⁠https://overcast.fm/itunes1485249347/once-upon-a-gene⁠

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://www.facebook.com/groups/1877643259173346/