It Happened To Me: A Rare Disease and Medical Challenges Podcast

For most people, stepping into the sunshine is an ordinary part of life. For Craig Leppert, even a few minutes of sun exposure can cause severe pain and swelling.

Craig lives with erythropoietic protoporphyria, or EPP, a rare genetic condition that causes extreme sensitivity to light. Born in Hawaii, raised on the Jersey Shore, and now working in the television industry in Los Angeles, Craig has spent much of his life planning around the sun.

In this episode, Craig joins hosts Cathy Gildenhorn and Beth Glassman to share what growing up with EPP was really like, how the condition affected his relationships and everyday choices, and why its often-invisible pain can be so difficult for others to understand.

Craig also discusses founding Shadow Jumpers in 2017. The nonprofit supports individuals and families with photosensitive conditions through sun-safe vacations, home renovations, protective clothing, medical assistance, transportation, and community programs.

In 2024, Shadow Jumpers launched Sun Escape, a free annual weekend camp where photosensitive families can enjoy activities including horseback riding, archery, zip lining, and water park access in a carefully sun-safe environment.

Craig also reflects on participating in a clinical trial of bitopertin, an investigational treatment for EPP, and what it felt like to spend hours outside without the severe pain that had shaped his life.

In This Episode, We Discuss

Craig’s earliest experiences with painful sun exposure

What an EPP reaction feels like

The childhood experiences and social events he missed

How EPP affected relationships, travel, work, and daily planning

Why Craig founded Shadow Jumpers

The practical support the organization provides to families

How Sun Escape creates a safe and joyful camp experience

Craig’s experience participating in a bitopertin clinical trial

His reaction to the FDA’s decision not to grant accelerated approval

Finding resilience, purpose, and community through advocacy

Craig’s message to children with EPP and their parents

About the Guest
Craig Leppert is the founder of Shadow Jumpers, a nonprofit supporting individuals and families affected by EPP and other photosensitive conditions through programs including Sun Escape, family assistance, protective clothing, and sun-safe experiences.

Craig’s diagnostic journey was featured on Discovery Channel’s Mystery Diagnosis in the episode “The Boy Who Kept Swelling,” and he later appeared with his family on The Dr. Oz Show. His life with EPP and advocacy through Shadow Jumpers were also recently featured in People.

Resources

Shadow Jumpers: shadowjumpers.org

Instagram: @shadowjumpers_

Facebook: Shadow Jumpers

People feature: Read Craig’s story

Video: Watch “The Boy Who Kept Swelling”

United Porphyrias Association: Education and support for people affected by EPP and other porphyrias

Bitopertin was previously studied as a potential treatment for schizophrenia but was never approved for that condition. It remains investigational and is not currently approved for EPP.

Connect With It Happened To Me Podcast
 

Stay tuned for the next episode of It Happened To Me. In the meantime, explore our previous episodes on Spotify, Apple Podcasts, YouTube, ItHappenedToMe.com, or your favorite podcast platform by searching for It Happened To Me.

It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Kira Dineen of Gene Pool Media serves as Executive Producer.

For questions, guest suggestions, or other inquiries, contact us at ItHappenedToMePod@gmail.com.

Infertility can affect nearly every part of a person’s life, from their emotional well-being and relationships to their finances, identity, and sense of control over the future.

After spending six years trying to conceive, navigating complex fertility treatments, and paying more than $100,000 out of pocket, Jessica Chalk understood firsthand how exhausting and isolating the fertility journey can become. Along with the physical demands of treatment, patients are often expected to coordinate appointments, track medical information, make complicated decisions, and advocate for themselves while coping with grief and uncertainty.

In this episode of It Happened To Me, Jessica joins hosts Beth Glassman and Cathy Gildenhorn for an honest conversation about the realities of infertility that are often hidden from view. She shares the emotional and financial weight of her experience, the impact it had on her identity and relationships, and what helped her continue through six difficult years.

Jessica also explains how feeling unsupported within the healthcare system ultimately inspired her to found myStoria and advocate for a more coordinated, compassionate approach to patient care.

In This Episode, We Discuss

The beginning of Jessica’s six-year journey to conceive

Realizing that becoming pregnant would be more complicated than expected

The isolation, grief, and uncertainty associated with infertility

What fertility treatments demand from patients physically and emotionally

Spending more than $100,000 out of pocket on treatment

How financial pressure intensified an already stressful experience

Feeling unseen and overwhelmed while navigating the healthcare system

The effects of infertility on identity, body image, and self-worth

How fertility struggles can affect partners, family members, and friendships

Hurtful comments and common misconceptions about infertility

Protecting your mental health during prolonged treatment

What helped Jessica continue during the most difficult moments

The support she wishes she had received earlier

What people who have not experienced infertility often misunderstand

The emotional turning point that inspired Jessica to create myStoria

How her experience changed her understanding of patient-centered care

Jessica’s message for anyone currently struggling to build a family

About Jessica Chalk
Jessica Chalk is the founder and CEO of myStoria, a patient-support platform created to help people organize medical information, prepare for appointments, coordinate care, and navigate complex reproductive health journeys.

Jessica’s work was inspired by her own six-year fertility journey, during which she experienced the emotional, financial, and logistical burden frequently placed on patients. She founded myStoria with the goal of ensuring that people facing complicated medical situations do not have to manage every aspect of their care alone.

Infertility Support and Educational Resources

myStoria: Patient navigation and organizational support for reproductive health and other complex medical journeys

RESOLVE: The National Infertility Association: Education, peer-led support groups, advocacy resources, and information for people experiencing infertility

ReproductiveFacts.org: Patient-friendly information from the American Society for Reproductive Medicine about infertility, reproductive health, testing, and treatment options

A Note for Our Listeners
Terminology update: During this episode, we use the term polycystic ovary syndrome (PCOS). Since the episode was recorded, the condition has been renamed polyendocrine metabolic ovarian syndrome (PMOS). The updated name is intended to better represent the condition’s wide-ranging hormonal, metabolic, and reproductive effects rather than suggesting that it is defined primarily by ovarian cysts.

Infertility can involve grief, pregnancy loss, financial hardship, medical trauma, and difficult decisions about family building. Please take care of yourself while engaging with this episode and seek support from a qualified healthcare or mental health professional when needed.

The experiences discussed in this episode reflect Jessica’s personal journey and are not intended as individualized medical advice. Treatment options, outcomes, costs, and insurance coverage vary considerably. Speak with your healthcare team about questions related to your own fertility or reproductive health.

Connect With It Happened To Me Podcast
 

Stay tuned for the next episode of It Happened To Me. In the meantime, explore our previous episodes on Spotify, Apple Podcasts, YouTube, ItHappenedToMe.com, or your favorite podcast platform by searching for It Happened To Me.

It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Kira Dineen of Gene Pool Media serves as Executive Producer.

For questions, guest suggestions, or other inquiries, contact us at ItHappenedToMePod@gmail.com.

In this episode of It Happened To Me, hosts Cathy Gildenhorn and Beth Glassman are joined by Kelly Berger and Avery Roberts, two women living with congenital muscular dystrophy and the co-hosts of the podcast Wheel Talk.

Congenital muscular dystrophy, or CMD, is a rare group of genetic conditions that affect muscle strength and mobility from birth or early childhood. For Kelly and Avery, living with CMD has shaped their experiences with independence, accessibility, mobility, advocacy, and identity. But as they make clear in this conversation, disability is not something to be hidden, minimized, or “fixed.” It is part of who they are.

Kelly and Avery share how they met, what life with CMD looks like for each of them, and how their relationship with disability identity has evolved over time. They also discuss what respectful support from others can look like, why unsolicited assumptions can be harmful, and how people can better understand wheelchair users as whole people living full, ordinary, meaningful lives.

The conversation explores Kelly and Avery’s advocacy work, including their meetings with state and federal legislators around rare disease, disability rights, Medicaid, and 504 protections. They discuss the importance of bringing lived experience into policy conversations, as well as their role in helping spearhead the U.S. portion of the inaugural World Collagen 6 Awareness Day (June 6th). Collagen 6-related muscular dystrophy is the ultra-rare form of CMD that both Kelly and Avery live with, making awareness and community-building especially meaningful.

Kelly and Avery also reflect on launching Wheel Talk podcast in 2025, why they felt a podcast was needed, and how they balance visibility with vulnerability when sharing their lives publicly. Through their platform, they are breaking down stereotypes, challenging misconceptions, and creating space for more honest conversations about disability, rare disease, and identity.

Discussion Topics:

What congenital muscular dystrophy is and how it affects muscle strength and mobility

Kelly and Avery’s personal experiences living with CMD

How wheelchair users can be supported respectfully

Common misconceptions about disability and mobility aids

Why disability identity can be empowering

Advocacy around rare disease, Medicaid, disability rights, and 504 protections

The importance of Collagen 6 Awareness Day

Building community within the rare disease and disability spaces

Why Kelly and Avery launched their podcast Wheel Talk

Advice for children growing up with physical disabilities

Hopes for the future of CMD research, disability inclusion, and community advocacy

About Kelly Berger and Avery Roberts
Kelly Berger and Avery Roberts are two women living with congenital muscular dystrophy and the co-hosts of the podcast Wheel Talk. Through their advocacy, public speaking, media work, mentorship, and legislative engagement, they use their lived experiences to challenge stereotypes, advance disability rights, and build community for people living with rare disease and physical disabilities.

Relevant Resources
The Capitol Crawl in March 1990 

Wheel Talk Podcast Website

Wheel Talk Podcast’s Instagram 

Wheel Talk Podcast via Apple

Wheel Talk Podcast via Spotify

Avery’s Instagram 

Kelly’s Instagram

World Col6 Myopathy Day

MedlinePlus’ Collagen VI-related dystrophy 

Connect With Us
 

Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 

 

“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

 

See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

For most of her life, Sadie Dingfelder thought she was simply quirky: bad with directions, unusually clumsy, unable to recognize faces, and disconnected from many of her own memories. Then, a startling encounter in a grocery store led her to question whether her experiences reflected something deeper.

In this episode of It Happened To Me, Cathy and Beth speak with Sadie about discovering that her brain processes faces, memories, images, and depth differently from most people’s. Her search for answers took her inside leading neuroscience laboratories, where she participated in brain-imaging studies and learned more about faceblindness, severely deficient autobiographical memory, stereoblindness, and aphantasia.

Sadie shares what it is like to attend a party where everyone recognizes her, but she cannot identify anyone else, and how the fear of offending people can create anxiety in social and professional settings. She also explains the strategies she developed during her journalism career, from recognizing people through their voices and mannerisms to navigating conversations without revealing that she did not know who she was speaking with.

The conversation also explores what it means to discover that other people can mentally replay scenes from their lives, visualize images in their minds, and perceive a level of three-dimensional depth that Sadie has never experienced. She reflects on the complicated mix of grief, relief, and self-understanding that accompanied these discoveries.

Sadie’s story reminds us that there is no single “normal” way to perceive, remember, or experience the world, and that many cognitive and visual differences remain invisible to the people around us.

In This Episode, We Discuss

The grocery store encounter that led Sadie to investigate how her brain works

The neurological difference between forgetting someone’s name and being unable to recognize their face

Navigating parties, professional events, and everyday interactions with faceblindness

The anxiety of unintentionally appearing rude or failing to recognize someone familiar

Severely Deficient Autobiographical Memory (SDAM) and the inability to mentally revisit personal experiences

The strategies Sadie used throughout her career as a journalist

How her cognitive differences affected childhood, independence, driving, and relationships

Stereoblindness and what it means to experience the visual world without typical 3D depth

Participating in neuroscience research and seeing differences in her brain through imaging

Aphantasia and how writing creatively without a visual imagination is possible

The freedom that can come from openly discussing an invisible disability

The grief and relief of finally understanding lifelong differences

What Sadie learned from vision therapy and attempts to develop 3D vision

Why cognitive and perceptual abilities may exist across a much broader spectrum than we realize

About Sadie Dingfelder
Sadie Dingfelder is a freelance science journalist whose writing has appeared in The New Yorker, National Geographic, and The Washington Post. She previously worked as a staff reporter for The Washington Post Express and as a senior science writer for the American Psychological Association’s Monitor on Psychology, where she covered neuroscience, cognitive science, and animal behavior.

She is the author of Do I Know You?: A Faceblind Reporter’s Journey into the Science of Sight, Memory, and Imagination, which combines memoir, investigative journalism, and neuroscience to explore the many ways human beings experience the world differently.

Connect With Us
 

Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 

 

“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

 

See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

In this episode of It Happened To Me, we continue our conversation with Dr. David Traster, a clinical neurologist and educator who works with patients experiencing complex neurological conditions.

In Part 1, Dr. Traster introduced clinical neurology, shared his personal experience with chronic illness and delayed diagnosis, and explained how neuroplasticity can help the brain adapt and recover. In Part 2, the conversation expands into how the nervous system affects far more than movement, including pain, digestion, heart rate, fatigue, balance, vision, and everyday functioning.

Dr. Traster explains how different areas of the brain and nervous system influence the body, and why neurological symptoms do not always appear clearly on imaging or lab results. He discusses how patients can feel dismissed when their symptoms are real but difficult to measure, and offers practical insight into how people can advocate for themselves while seeking a diagnosis and appropriate care.

Cathy and Dr. Traster also explore the connection between balance, vision, the inner ear, and spatial orientation. Using clear examples, Dr. Traster explains how the brain integrates information from the eyes, body, and vestibular system, and how dizziness, vertigo, motion sensitivity, or imbalance can occur when those systems are not communicating properly.

The episode also looks at neurological recovery across the lifespan. Dr. Traster emphasizes that people are never “too old” or “too sick” to improve brain function, although each person’s recovery depends on their condition, limitations, and consistency. He explains the importance of repetition and targeted exercise in strengthening brain pathways, and why practice can help make functional improvements more lasting.

This conversation closes with a hopeful look at the future of neurological recovery, including the role of technology, AI, advanced imaging, and new tools that may help us better understand and support the brain.

In This Episode, We Discuss:

How the nervous system affects pain, digestion, heart rate, fatigue, and emotions

Why some neurological symptoms do not show up on MRIs, CT scans, or lab work

The challenges patients face when symptoms are dismissed or misunderstood

How to advocate for yourself when something feels wrong

Why diagnosis matters before treatment can be effective

How balance, vision, the inner ear, and body awareness work together

What can cause dizziness, vertigo, motion sensitivity, and imbalance

How people with vision loss or visual limitations can strengthen other systems

Why neurological recovery is possible at every age

How exercise, nutrition, social connection, and learning support brain health

The role of repetition and targeted exercises in retraining the nervous system

Common misconceptions about the brain’s ability to heal

Why technology may transform the future of neurological care

About Dr. David Traster
Dr. David Traster is a clinical neurologist and educator with nearly two decades of experience working with patients experiencing complex neurological conditions. His background as an athlete and personal trainer, along with his own experience navigating injury and chronic health challenges, shaped his approach to neurological recovery and rehabilitation.

Dr. Traster has advanced training in concussion, dizziness and vertigo, movement disorders, autonomic nervous system conditions, and childhood developmental disorders. His work focuses on helping patients improve function through neurorehabilitation, targeted exercises, and individualized care.

Listen to Part 1
Listen to Part 1 of this conversation on Episode 85 of It Happened To Me to hear Dr. Traster explain clinical neurology, his own experience with delayed diagnosis and Lyme disease, concussion recovery, targeted brain rehabilitation, and neuroplasticity.

Connect With Us
 

Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 

 

“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

 

See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.