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    Arts

    Rare Rebels™

    The Rare Rebels™ Podcast shares 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.

    Advertise

    Copyright: © 2021 Imperfect Joy, LLC All Rights Reserved.

    • Apple Podcasts
    • Google Play
    • Spotify

    Latest Episodes:
    Archived - Sharing stories of resilience through pediatric illness Jun 02, 2023
    Show notes

    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.


    Archived - Patrick Moreau - Embracing imperfection for authentic voice overs May 04, 2021
    Show notes

    https://www.musestorytelling.com/


    Archived - Anja Poehlmann - Capturing life stories through the teen years Mar 23, 2021
    Show notes

    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


    Archived - Mandee Simas - Lifestyle wall art and healing through photos.mp3 Mar 10, 2021
    Show notes

    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


    Archived - Melissa Ortendahl - Storytelling is a constant in all genres.mp3 Mar 03, 2021
    Show notes

    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


    Archived - Lolly Nazario - Authentic Storytelling with In-Home Newborn Sessions Feb 23, 2021
    Show notes

    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


    Archived - Carter Paine - My 6 year old’s love note Feb 14, 2021
    Show notes

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


    Archived - Candice Shuman - Unconventional views of joy Feb 14, 2021
    Show notes

    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


    Archived - Anja Poehlmann - Imperfections are part of joy Feb 14, 2021
    Show notes

    Companion Blog: https://imagesofjoy.com/episode-5/

    .

    ------Guest Info------

    Anja Poehlmann

    Brighton & Hove, UK

    https://www.anjapoehlmann.com/

    https://www.instagram.com/by_anjap/


    Archived - Mandee Simas - Light capturing the magic of the moment Feb 14, 2021
    Show notes

    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/


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