Rare Rebels™

The Rare Rebels™ Podcast shares raw, unscripted conversations with patients, caregivers, advocates, and researchers who are changing the future of rare disease. These aren’t polished soundbites — they’re real voices from the front lines, revealing the humanity, heartbreak, and hope woven into the rare disease experience. Because change doesn’t happen through statistics alone — it happens through connection. Hosted by award-winning storyteller and advocate Melody Joy Paine, Rare Rebels™ brings lived experiences to the forefront, bridging gaps between families, researchers, nonprofits, and industry stakeholders. Through these deeply personal stories, we build understanding, inspire action, and drive meaningful change. Formerly known as the Images of Joy Podcast, Rare Rebels™ is a relaunch and expansion that retains archived episodes while introducing a new lens: one focused on amplifying the rebels in rare disease who refuse to wait for systems to change and are doing something about it.

Archived - Sharing stories of resilience through pediatric illness

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 joy amidst extremely difficult circumstances, while also recognizing times that the light seemed so distant that they fell into the arms of their tribes.

06-02
02:34

Archived - Anja Poehlmann - Capturing life stories through the teen years

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. ---- Featuring Anja Poehlmann https://www.anjapoehlmann.com/ https://www.instagram.com/by_anjap/ ---- www.imagesofjoy.com

03-23
39:38

Archived - Mandee Simas - Lifestyle wall art and healing through photos.mp3

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 What is a wall scroll? 16:55 In-House finishing 17:10 Guiding clients to the products we love most 17:34 Finding ways to print your own memories 18:20 Memorial sessions for pregnancy & infant loss 24:36 Layers of stories in times of joy 25:58 Image of Joy #1 - watering plants 28:35 Using reflected light 29:38 Image of Joy #2 - grocery cart 32:24 Image of Joy #3 - spinning 33:13 Capturing grandparents too 33:49 Assembling my daughter’s newborn film two years later 36:23 Apply for a mentorship: https://imagesofjoy.com

03-10
37:06

Archived - Melissa Ortendahl - Storytelling is a constant in all genres.mp3

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 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 children,” preserving our stories 08:37 Memories passed down to us 10:22 Printing photos - memories we can hold 13:47 Making our stories accessible to our children 16:02 Difference between in-home and studio newborn sessions 18:25 In-home details captured 20:09 Including pets & family activities 21:07 Attire & your home during in-home newborn sessions 22:40 Finding comfort in authenticity & giving grace to meltdowns 24:56 Instructing kids without forcing them 25:39 Balancing guided posing & lighting without being obtrusive 28:01 Apply for the Family Filmmakers Certification Beta: https://imagesofjoy.com 28:43 Lolly’s image of joy #1 - (photography with her daughter) Sharing the stories within stories 32:42 Lolly’s image of joy #2 - (reading on the stairs) finding beauty in imperfection 35:33 Lolly’s image of joy #3 - bond between father & daughter 36:42 Lolly’s images of joy #4 & #5 - (dress-up & laugh ) authentic expressions 38:00 Seeing our own stories in other families’ photographs 39:13 Letting go of perfection 41:22 How to work with Lolly

03-03
48:12

Archived - Lolly Nazario - Authentic Storytelling with In-Home Newborn Sessions

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 children,” preserving our stories 08:37 Memories passed down to us 10:22 Printing photos - memories we can hold 13:47 Making our stories accessible to our children 16:02 Difference between in-home and studio newborn sessions 18:25 In-home details captured 20:09 Including pets & family activities 21:07 Attire & your home during in-home newborn sessions 22:40 Finding comfort in authenticity & giving grace to meltdowns 24:56 Instructing kids without forcing them 25:39 Balancing guided posing & lighting without being obtrusive 28:01 Apply for the Family Filmmakers Certification Beta: https://imagesofjoy.com 28:43 Lolly’s image of joy #1 - (photography with her daughter) Sharing the stories within stories 32:42 Lolly’s image of joy #2 - (reading on the stairs) finding beauty in imperfection 35:33 Lolly’s image of joy #3 - bond between father & daughter 36:42 Lolly’s images of joy #4 & #5 - (dress-up & laugh ) authentic expressions 38:00 Seeing our own stories in other families’ photographs 39:13 Letting go of perfection 41:22 How to work with Lolly

02-23
43:18

Archived - Carter Paine - My 6 year old’s love note

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

02-14
18:06

Archived - Candice Shuman - Unconventional views of joy

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

02-14
08:06

Archived - Anja Poehlmann - Imperfections are part of joy

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

02-14
04:46

Archived - Mandee Simas - Light capturing the magic of the moment

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/

02-14
04:45

Archived - Melissa Ortendahl - A family of 5 self-portrait

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/

02-14
07:28

Archived - Lolly Nazario - Teaching her daughter photography

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

02-14
07:15

Archived - Melody Joy - Why I am creating this podcast

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

02-14
14:28

Archived - Images of Joy Trailer

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

01-31
02:00

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