Rare Rebels™

When this conversation with Shelley Bowen was recorded, there was no resolution yet. Families were still waiting — still pushing — still living inside the uncertainty of whether a treatment would ever make it across the finish line. Shelley is a parent of children with Barth syndrome, and in this episode, she speaks from inside that reality. She talks about what happens when no one will care more...

Léon van Wouwe brings a systems-level perspective to rare disease through his work applying machine learning to healthcare data. His focus is on identifying patients who are already interacting with the healthcare system but remain undiagnosed due to the subtle and complex nature of rare diseases. In this episode, Léon explains how data models can detect patterns that clinicians may not recognize...

Episode 6: Wes Michael | Building the Infrastructure for Patient Voice Wes Michael brings a systems-level perspective to the rare disease ecosystem through his work as the founder of Rare Patient Voice. With a background in market research, Wes recognized early on that healthcare organizations lacked ethical and effective ways to listen to patients, especially those navigating rare and complex con...

Episode 5: Jennifer Siedman | Making Space for Care, Grief, and Hope Jennifer Siedman brings a steady, thoughtful presence to conversations that many families struggle to name. As a parent and leader at Courageous Parents Network, her work focuses on helping families navigate serious illness with clarity, compassion, and support, especially when there are no easy answers. In this episode, Jennifer...

Episode 4: Megan Soliman | When Medicine Meets Lived Experience Megan Soliman brings a rare dual perspective to this conversation as both a physician and a parent navigating rare disease. Her experience highlights the tension between how medicine is taught and how it is practiced when families are facing diagnoses that don’t fit neatly into standard systems of care. In this episode, Megan reflects...

Episode 3: Susannah Fox | Mapping the People Who Move Systems Susannah Fox brings a unique ability to listen deeply and reflect patterns back to the people living them. In this conversation, she shares how that way of listening has shaped her work as a researcher and author, and why it matters so much in spaces where systems are fragmented and people are often left to navigate on their own. The ep...

Episode 2: Emil Kakkis | When Science Becomes Human Emil Kakkis began his career wanting to focus on the science. He imagined a life in the lab, driven by research questions and discovery. What he didn’t anticipate was how deeply personal rare disease work would become. In this conversation, Emil shares how his relationship with families affected by MPS I, particularly his partnership with Mark Da...

Episode 1: Mark Dant | Connecting the Dots When No Path Exists Mark Dant’s story sits at the foundation of modern rare disease advocacy. Long before online communities, searchable research, or established pathways for drug development, Mark was a father who was told that nothing could be done for his son Ryan, who was diagnosed with MPS I. In this conversation, Mark reflects on what it meant to re...

If you’ve been subscribed to this feed for a while and you’re wondering how you got here, you didn’t miss anything — the work just evolved. This feed began as Images of Joy and has grown into Rare Rebels™, expanding from preserving family stories into exploring how awareness, connection, and action intersect in rare disease. This short bridge episode explains the evolution and what to expect movin...

The Imperfect JOY® podcast is taking on a new focus. We will explore resilience through many different challenges that families face when they have a child diagnosed with critical illness. We’re not looking to highlight a specific diagnosis but rather the diverse experiences that allow us to step into the perspective of these families. This podcast will share how they are able to be present for jo...

https://www.musestorytelling.com/

As kids get older and naturally become more distant from their parents as the explore their indepedence and the way they fit into the larger world outside of the home, it often becomes challenging to document this time with them. Anja provides insight about why the teenage years should still be captured and how she captures meaningful moments for families through her photography and filmmaking. --...

Join our Affinity group or apply for a mentorship: https://imageofjoy.com — Mandee Simas Bewilder Photography https://www.instagram.com/bewilderphotos — 03:28 Who is Mandee 05:30 Adjusting her approach to photography for her son who is on the spectrum 07:14 Creating lifestyle wall art 12:30 Taking photos and making memories on their land 14:40 The story behind the name bewilder photography 16:20 W...

Melissa Ortendahl https://www.melissaortendahlphotography.com/ https://www.instagram.com/melissaortendahlphotography/ ---- View Melissa's Images of Joy: https://imagesofjoy.com/episode-3/ Follow us: https://www.instagram.com/images.of.joy Apply for the Family Filmmakers Certification Beta: https://imagesofjoy.com ---- 01:00 How Lolly got started in photography 01:34 Current professional photograph...

Lolly Nazario https://www.lollyslens.com/ https://www.instagram.com/lollyslensphotography/ ---- Apply for the Family Filmmakers Certification Beta: https://imagesofjoy.com ---- 01:00 How Lolly got started in photography 01:34 Current professional photography focus 02:07 Motherhood - the push and pull for time and attention 03:30 “ Suspend your moments” 05:01 “Photography is a love letter to our ch...

Watch Carter's video love note on the companion blog post: https://imagesofjoy.com/episode-8/

View Candice's image of joy on the companion blog: https://imagesofjoy.com/episode-7/ . -----Guest info------ Candice Shuman Candice Shuman Films & Photos Ontario, Canada https://www.instagram.com/candice.shuman https://www.facebook.com/candiceshumanfilmsphotos/?ref=py_c

Companion Blog: https://imagesofjoy.com/episode-5/ . ------Guest Info------ Anja Poehlmann Brighton & Hove, UK https://www.anjapoehlmann.com/ https://www.instagram.com/by_anjap/

See Mandee's image of joy on the companion blog post: https://imagesofjoy.com/episode-4/ . -----Guest info----- Mandee Simas Bewilder Photography Muskoka, Canada https://www.instagram.com/bewilderphotos/

See Melissa's image of joy on the companion blog post: https://imagesofjoy.com/episode-3/ . ------Guest Info------ Melissa Ortendahl Photography Central, Massachusetts https://www.melissaortendahlphotography.com/ https://www.instagram.com/melissaortendahlphotography/ Hello Storyteller https://hellostoryteller.com/ https://www.facebook.com/hellostorytelleracademy/

Companion blog post: https://imagesofjoy.com/episode-2/ . ------Guest speaker------ Lolly's Lens Photography https://www.lollyslens.com/ https://www.instagram.com/lollyslensphotography/

Watch the companion film: https://imagesofjoy.com/episode-1/ . ------Host Info------ Melody Joy Paine Central, Massachusetts Imperfect Joy Films & Photos www.imperfectjoy.com https://www.instagram.com/imperfect_joy_/ https://www.facebook.com/imperfectjoy

Watch the companion film: https://imagesofjoy.com/podcast/