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...
ONCE UPON A GENE - EPISODE #282: Delighting in the Child You Have: A Father's Journey Through Grief, Acceptance, and Joy Raising a Son with FOXP1 Syndrome with Brandon Boyd
In this episode of Once Upon a Gene, Effie talks with Brandon Boyd, father of two and author of Delighting in Ben, about raising his son Ben, who lives with FOXP1 syndrome, and the shift from trying to change his son's future to learning to appreciate the person right in front of him.
Brandon shares the grief he experienced in the early years, the pressure to pursue every therapy, and the loneliness of navigating disability as a dad before genetic testing and online communities were widely available. He also shares a turning point during an ordinary trip...
ONCE UPON A GENE- EPISODE #282: Epilepsy Awareness Day at Disneyland—Education, Community, and What Families Can Expect with Brad Levy
In this episode, Effie talks with Brad Levy, founder of Epilepsy Awareness Day at Disneyland, about what families can expect at the expo, how to make the most of the event, and why connection matters when you’re navigating epilepsy.
The expo brings together families, clinicians, hospitals, researchers, and companies working in epilepsy. Across two days, attendees can hear expert presentations on epilepsy basics, EEGs, surgery, treatment options, clinical trials, and genetic epilepsies. Brad also shares how the event grew from a community day at Disneyland into a major gathering—and what he hopes families take away from...
ONCE UPON A GENE- EPISODE #281: Making Memories: A Mom of a Daughter with Friedreich’s Ataxia on Last Steps, Make-A-Wish, and Not Letting the Future Steal the Day w/ Laurel Frost Coffey
Laurel on Amelia, Friedrich’s Ataxia, and Choosing Joy in the Face of ProgressionLaurel shares her family’s experience raising Amelia, who was diagnosed with Friedrich’s ataxia at age 8 after early signs showed up around age 5. This conversation covers the path to diagnosis, the emotional reality of progressive illness, and how Laurel stays present with Amelia while making memories now.We discuss Laurel’s perspective as a mom, the impact on Amelia’s brothers, the role of community, and the hope she sees in current research and clinical trials. Effie Parks and Laurel also talk openly about grief, joy, sibli...
ONCE UPON A GENE- EPISODE #280: Comparing Our Kids: Guilt, Milestones, and Connection in Rare Disease Parenting
Have you ever celebrated another child’s milestone while quietly wondering why your own child hasn’t reached it? Or caught yourself thinking, “Their kid can walk, talk, and eat - why do they think this is so hard?”
We don’t love admitting it. But maybe we could talk about it.
In this Effisode, I’m brainstorming about comparison in parenting our kids with disabilities, including my own moments of seeing other children with CTNNB1 syndrome reach milestones and wondering whether I missed something with Ford. I know how much I’ve poured into supporting him...
ONCE UPON A GENE- EPISODE 279: Falling Into Place: A Pocket Bible of Wisdom from the Colorado Mama Tribe
Colorado Mama Tribe invited me out to talk about storytelling. What I found was even more than I had hoped for. They did it. They figured it out - at least some of it. And what hasn’t been solved yet already has bones.
That’s the falling into place. Not one perfect click. More like dominoes. One mama tells the truth. The next one doesn’t have to start from nothing. The piece that was missing finds the piece that was waiting, and suddenly the whole line can move.
Little bites from the women in tha...
ONCE UPON A GENE –EPISODE 278: His Son Was Diagnosed with Congenital Adrenal Hyperplasia (CAH) — A Dad’s Honest Story of Overwhelm, Faith, and Finding Hope Through Treatment w/ Matt Abernethy
Effie welcomes Matt Abernethy, a father and biotech executive whose story feels almost too perfectly timed to be real. Matt’s youngest son, Ian (now 13), was diagnosed with classic congenital adrenal hyperplasia (CAH) at age two. While navigating the overwhelm, fear, and daily stress of managing a rare disease, Matt received a cold recruiter call for a CFO role at Neurocrine Biosciences — a company actively developing a treatment for CAH. He and his wife Brittany made the leap of faith, moving their family from Indiana to San Diego. Matt kept his personal connection private for years so he could lead...
ONCE UPON A GENE – EPISODE 277: A Mother’s Son Was Diagnosed with the Rare, Debilitating Disease LMNA-Related Congenital Muscular Dystrophy (L-CMD) — A Mother’s Story of DNR Orders and How Those Decisions Change Over Time with Hannah Lowe
Hannah Lowe is back on the show. In this episode, Effie and Hannah discuss do not resuscitate orders for children with rare diseases. Hannah shares her experience with her son Austin and how the conversation around DNRs came up for their family. They talk about the decision-making process, how feelings around these choices can change over time, and why these conversations matter in the rare disease community.
The episode also touches on planning ahead, the emotional side of these decisions, and the importance of having these talks before a crisis hits.
In this episode:
...ONCE UPON A GENE – EPISODE 276: His Two Sons Were Diagnosed with Coats Plus Syndrome — One Father’s Story of Rare Disease Advocacy and Brotherhood with Bryan Docobo
Bryan Docobo — attorney, father, rare disease advocate, and founder of the Coats Plus Foundation. Bryan opens up about the devastating journey of losing his four-year-old son Ethan to Coats Plus Syndrome (a rare telomere disorder caused by a CTC1 gene mutation) in June 2024, while fiercely fighting for his older son Liam, who is also battling the same condition. Bryan shares the pre-diagnosis struggles, the shocking moment of Liam’s grand mal seizure that led to the diagnosis, the science behind the disease (telomere dysfunction affecting blood vessels, brain, eyes, and GI tract), and the proactive steps his family has take...
ONCE UPON A GENE – EPISODE 275: How AI is Making Personalized Therapies Faster, Cheaper, and Accessible for the World’s Rarest Diseases with Steven Ringel
Get your free Nome report at www.nome.bio – Families can upload a genetic report and receive a free personalized therapy feasibility report in minutes.
In this powerful conversation, Effie Parks sits down with Steven Ringel — patient, sibling of a patient, founder of the Kizuna Foundation, and CEO of Nome to discuss how AI is revolutionizing personalized medicine for the smallest rare disease communities. Diagnosed at 17 with an ultra-rare inherited retinal disease caused by mutations in the KIZ gene (and later learning his younger sister Natalie shares the exact same diagnosis), Steven refused to accept the doctors’ advice...
ONCE UPON A GENE – EPISODE 274: Caregiver Archetypes of Survival (Part 4) | The Victim Archetype: From Cowardly Lion to Roaring Warrior – Reclaiming Your Inner Courage Without Losing Yourself with Christy Foster
In the final episode of their four-part archetype series, Effie Parks and archetype expert Christy Foster explore the Victim Archetype—represented by the Cowardly Lion in The Wizard of Oz. They emphasize that archetypes are neutral energies (as taught by Carl Jung and Caroline Myss) that everyone experiences. The conversation is tailored for parents raising children with disabilities, focusing on the real, repeated feelings of powerlessness, fear, and exhaustion—and how to alchemize them by dancing between the Victim and the Warrior. Christy guides listeners through noticing victim language and patterns, invoking the Warrior for sacred action (like holding your...
ONCE UPON A GENE - EPISODE 273 Caregiver Archetypes of Survival (Part 3) The Saboteur Archetype: Reclaiming Your Inner Authority Without Losing Yourself, w/ Christy Foster
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 b...
ONCE UPON A GENE - EPISODE 272 Caregiver Archetypes of Survival (Part 2) The Prostitute Archetype: Reclaiming Your Worth Without Losing Yourself, w/ Christy Foster
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:
How this archetype show...Caregiver Archetypes for Survival (Part 1) The Child Archetype : Soothe Your Inner Child Without Letting It Drive the Bus, w/ Christy Foster
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...
From Hopeless Grief to Heavenly Hope: Brittni Lamb on Surrender, Faith, and Raising a Son with Hereditary Spastic Paraplegia SPG3A
Episode Description: In this warm and deeply honest conversation, I sit down with my sweet friend Brittni Lamb — a sunshine-loving mama in Arizona raising two daughters and her adorable son Jameson, who has the ultra-rare Hereditary Spastic Paraplegia SPG3A.
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 spec...
Smarter Speech: How Q-Voice Is Changing AAC for Families and Therapists with Lana Marcucio
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 fo...
Why Genetic Testing Matters: The Case for Genetic Testing and the Start Genetic Movement - with Geraldine Bliss
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:
...Mini Brains in a Dish: Organoids and the Future of Personalized Rare Disease Medicine
In this episode of Once Upon a Gene, Effie sits down with Dr. Maya Gosztyla from Brainstorm Therapeutics to explore one of the most exciting frontiers in rare disease research - organoids. These “mini brains in a dish” are clusters of real human brain cells grown from a child’s stem cells. They’re giving researchers and families new ways to study disease, test drugs, and imagine personalized treatments.
Effie and Maya talk about:
What organoids are and why they matter for rare diseases
How organoids could replace traditional mouse models, speeding...
Healing in the Mess: Storytelling, Friendship & Finding Love - Author of The Unlikely Village of Eden, Emma Nadler
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...
15 Years of Simons Searchlight: Dr. Wendy Chung on How Families Shape Rare Disease Research and Spark Aha Moments - with Wendy Chung
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
The understanding of autism has evolved significantly over the years. Community support is crucial for families dealing with genetic conditions. Simon's Searchlight aims to leverage collective knowledge for better outcomes. Language equity is essential for...A Rare Collection - Rare Disease Storytelling with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point
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 wi...
Finding Joy in the Journey: A Guide for Parents of Medically Complex Kids with Amber Pierson & Chelsea Kuhn
Discount Code for 20% off: ONCEUPONAGENE
Chelsea and Amber of Lemon Cake—two fellow rare moms on a mission—pop in to remind you that even when seizures, meltdowns, and endless therapies feel like they’re winning, there’s still room for belly laughs, tiny victories, and yes, a slice of cake. I had so much fun chatting with these bright lights as they shared how a spontaneous Instagram Live turned into a lifeline for parents of medically complex kids. They unpacked those “garage-floor” prayers, served up bite-sized self-care hacks and showed us how to keep carving out joy in the t...
From Beast Games Champ to Rare Disease Warrior: Jeff Allen’s 365-Mile Ruck for His Son’s Creatine Transporter Deficiency
In this episode, Jeffrey Allen, a passionate advocate for rare disease awareness and a dedicated father to Lucas, who has creatine transporter deficiency.
(CTD is also referred to as SLC6A8 Deficiency, CRTR, and X-linked Creatine Transporter Deficiency.Mutations in the SLC6A8 gene result in CTD.While patients with CTD have the necessary AGAT and GAMT enzymes to form creatine, the creatine transporter does not function properly. This results in creatine in the bloodstream, but not in the brain and muscles.)
Jeffrey shares his journey of parenting a child with a rare disease, the...
GeneDx Launches Cerebral Palsy Genetic Testing Pillar & Discover Snapshot: For Deeper Insights and to Help You Grow Your Patient Community – with Gay Grossman
In this episode of Once Upon a Gene, I’m joined again by rare mom and powerhouse advocate Gay Grossman. Gay works at GeneDx—home to one of the largest clinical genomic databases—and she’s here to share two exciting updates that could change everything for rare families and patient advocacy orgs.
We talk about:
GeneDx’s new commitment to the cerebral palsy community and why every CP diagnosis deserves a genetic test
How families can access exome and genome testing through telehealth
The launch of the Discover S...
Empowered Kids - Painless Labs :O'Ryan Health’s At‑Home Blood‑Draw Revolution with Tim Coleman
Turning Kids into Superheroes of Science with O’Ryan Health
The world of pediatric autoimmune and rare diseases can feel isolating—especially when answers live behind hospital walls or research centers far from home. But what if science came to you? What if kids could lead the charge in reimagining care?
In this episode, I’m joined by Dr. Tim Coleman, co-founder and COO of O’Ryan Health, a company flipping the script on pediatric research. Their breakthrough Artemis Platform is a child-friendly, at-home blood collection and logistics system that supports autoimmune, rare disease...
Navigating the Complexities of Grief: How One Mother’s Grief Birthed a Supportive Community with, Heather Straughter.
In this heartfelt conversation, Heather Straughter shares her
profound journey through grief after the loss of her son, Jake. She discusses
the pivotal moments that shaped her path, the importance of community support,
and the ongoing nature of grief. Heather reflects on the complexities of
acknowledging loss, the unexpected triggers that can arise, and her evolving
perspective on grief hierarchies. Through her experiences, she emphasizes the
significance of finding one's own way to cope and the power of humor in
navigating the dark moments of...
Reimagining Pediatric Healthcare: How Imagine Pediatrics is Revolutionizing In-Home Medical Care for Medically Complex Kids and Lightening the Load for Families - Taylor Beery and Jody Copp
Reimagining Pediatric Care with Imagine Pediatrics
For families of medically complex kids, the healthcare system often feels broken—long hospital stays, insurance battles for basic needs, and constant caregiving without real support. But what if there was a better way?
In this episode, I’m joined by Taylor Beery, co-founder of Imagine Pediatrics, Jody Copp, a full-time rare disease dad of two boys with Combined oxidative phosphorylation deficiency type 13 associated with a mutation in the PNPT1 gene and whose family has experienced firsthand the impact of their care model. Imagine Pediatrics is changing the game by p...
How a Service Dog Helped a Child with CACNA1C-Related Disorder (Timothy Syndrome) Gain Independence – with Sue Bresnahan
Service dogs are often associated with guiding the blind or assisting with mobility, but their impact goes far beyond traditional roles. In this episode, I’m joined by Sue Bresnahan, a pediatric nurse and rare mom, whose son has CACNA1C-related disorder (Timothy Syndrome). When they welcomed Yammy, his service dog, into their family, everything changed. Yammy didn’t just provide companionship—he unlocked a level of independence and confidence that Sue never imagined possible for her son.
Sue shares their journey, the process of getting a service dog, and why families of kids with disabilities should consid...
Unlocking Rare Disease Diagnoses with PacBio’s Long-Read Sequencing – A Conversation with CEO Christian Henry
I’m joined by Christian Henry, CEO of PacBio, a company leading the way in high-accuracy long-read sequencing. We break down what that means in simple terms, how this technology is helping families solve their diagnostic odyssey, and why some genetic tests miss key information that PacBio can detect. Plus, if you've already had whole genome sequencing without finding an answer, Christian explains why it might be time to take another look.
We also dive into the future of genetic testing, what needs to change for sequencing to become a routine part of medical care, and how fa...
Prioritizing Caregiver Health: Gut Health, Stress, and Sustainable Wellness for Parents of Kids with Disabilities – with Integrative Health Practitioner & CTNNB1 Mom, Fraser Bridgeman
As caregivers, we give everything to our kids—but where does that leave us? Burnt out, exhausted, and running on fumes. If you’ve ever felt like you don’t even know where to start when it comes to your own health, this episode is for you.
I’m talking with Fraser Bridgeman, a fellow CTNNB1 mom and a functional integrative health practitioner, about the small but powerful changes we can make to support our own well-being. Fraser understands the unique challenges rare disease caregivers face—chronic stress, poor sleep, inflammation, and running on adrenaline for years at a time...
Breaking the Silence: Growing Up with Sickle Cell, Facing Pain, and Finding Strength Through Advocacy with James Griffin
In this powerful episode of Once Upon a Gene, I sit down with James Griffin, author of Breaking Silence: Living With Sickle Cell Anemia. Diagnosed at just two years old, James spent much of his life keeping his condition a secret, fearing how others would perceive him. He faced excruciating pain, hospitalizations, and the daily challenges of living with a chronic illness—all while navigating school, friendships, and a world that often didn’t understand his struggles.
Now, as an advocate and author, James is using his voice to raise awareness, empower others with sickle cell disease, and...
Lighting the Way: A Story of Love, Friendship, and Finding New Dreams - CERT1 w/ Samantha & Wesley Rogers
In this inspiring episode of Once Upon a Gene, I sit down with Samantha and Wesley Rogers, founders of Lottie’s Light Foundation, and proud parents of the incredible Lottie, who lives with a CERT1 mutation. The Rogers share the heartfelt story of how their journey with Lottie led to the creation of a foundation dedicated to empowering families, fostering connections, and encouraging others to find strength in the face of challenges.
We explore how their mission encourages fighting for meaningful friendships, dreaming new dreams, and discovering untapped capacity for love and purpose. This conversation will leave yo...
Preconception & Prenatal Genetic Testing 101: A Conversation with Genetic Counselor, Natalie Richheimer
In this episode, I sit down with Natalie Richheimer, a genetic counselor at JScreen, to dig into the world of preconception and prenatal genetic testing. We explore the basics of carrier screening, how to interpret results, and the importance of genetic counseling for both new and experienced parents—especially those who already have a child with a rare disease. Natalie also sheds light on Variants of Uncertain Significance (VUS) and offers insight into talking with family members about genetic risks and results.
Throughout our chat, Natalie emphasizes that knowledge truly is power when it co...
Transforming Pediatric Rare Disease Research: Dr. Ramin Eskandari on Neurosurgery, Biorepositories, and Empowering Families and Medical Teams to Save Residual Samples
Show Notes: Transforming Pediatric Rare Disease Research with Dr. Ramin Eskandari
In this episode, I’m joined by Dr. Ramin Eskandari, a pediatric neurosurgeon at MUSC who is revolutionizing rare disease research through his innovative work with biorepositories. Dr. Eskandari shares how his dedication to helping children and families has driven him to create a system that collects and preserves valuable CNS samples—residual materials that would otherwise be discarded. We discuss the incredible impact of these efforts on the future of rare disease therapeutics and how families can play an active role in advancing research.
H...
Eight Years of Searching: A Determined Family’s Quest to Cure an Ultra-Rare CLCN6 Mutation with Kristin & Paul Purdy
Links & Resources:
Follow Their Journey on Social Media
Facebook: Paxtons Pioneers Instagram: Paxtons_PioneersKCAL News Story
Watch the in-depth feature on their family’s advocacy here: KCAL Rare Disease CoverageChasing Glimmers - From Grief to Glitter: Parenting Through Infantile MLD and Embracing Life’s Full Spectrum - with Megan Gillet
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 explore how glimmers light our way forward. Let's chase those glimmers together!
EPISODE HIGHLIGHTS:
Effie & Katie welcome guest Megan Gillet. Her daughter, Nellie, endures terminal Infantile MLD. Megan shares her unique journey of embracing life in all its vibrant...
The Gift of Grace: A Holiday Heart-to-Heart for Caregivers
Dear Friends,
The holidays can be a beautiful time of connection, joy, and celebration—but for caregivers, it can also be a season that amplifies the weight we carry every day. The expectations, the comparisons, the logistics of making life work for our kids—it all feels louder somehow.
This episode is my friendship letter to you, my fellow caregivers, during this holiday season. It’s for the days when the to-do lists are endless, the appointments keep coming, and the social invitations feel more isolating than joyful. It’s for the moments when you catch yo...
Grateful Reflections for Thanksgiving and Epilepsy Awareness Month: Parents Share Love, Lessons, and Insights from the Dravet Syndrome Community
2024 DSF Biennial Family & Professional Conference
June 20th to June 22nd. This three-day gathering united all those committed to improving the lives of individuals with Dravet syndrome – including families, caregivers, clinicians, researchers, and biopharmaceutical professionals. It provided a platform for fostering new relationships and collaborations among families and professionals alike.
Recorded sessions from the conference can be accessed on demand by both virtual and in-person registrants through December 31, 2024.
Ready for Take Off: Mission for Accessible Air Travel & Disability Advocacy, with Mindy Henderson
Episode Highlights:
Mindy Henderson, a powerful advocate for disability rights and the Director & Editor-In-Chief of MDA's Quest Media. Mindy shares her journey of breaking barriers in the skies, working tirelessly to make air travel more accessible for wheelchair users and the broader disability community. She delves into practical tips for navigating travel with a wheelchair-using child, explains the importance of universal design, and discusses how sharing your story can be a catalyst for change.
Mindy also talks about her book, The Truth About Things That Suck, and the role of mindset in overcoming adversity. Packed...
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
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 and guilt.
EPISODE HIGHLIGHTS
Where does your career in genetic counseling begin?
I was...
Hospital Survival Kit - Advocating for Your Child Without Losing Yourself
