Duchenne Connections

Duchenne Connections

The podcast where lived experience meets real conversation. Join Michelle Pomeroy and Donna Anderton as they explore the Duchenne journey through honest stories and shared experiences that connect our community.

  1. 3d ago

    Advocacy, Family & Balancing Life with Duchenne: Patricia's Story | Duchenne Connections S2 E5

    🎙️Advocacy, Family & Balancing Life with Duchenne: Patricia's Story | Duchenne Connections S2 E5 Content Note: This episode includes conversations about death, grief and the loss of a loved one. We encourage listeners to consider whether now is the right time to engage with these topics. Every family's Duchenne journey looks different. In this episode, Michelle and Donna are joined by Patricia, mum to Ollie, a 16-year-old with Duchenne, and his older sister Emily, a manifesting carrier. Patricia shares her family's unique journey, beginning with Ollie's diagnosis at just 10 weeks old and the ups and downs of navigating Duchenne over the years. Join the conversation as Patricia reflects on her years of fundraising and advocacy within the Duchenne community, and how she has learnt to balance her aim to make a difference with the changing needs of her family. She also opens up about the loss of her husband, Tim, and the importance of having people around her family to support them through difficult times. Looking back, Patricia reflects on how her priorities have shifted towards making the most of life with her children, and learning to step back in accepting support while encouraging Ollie to pursue his own passions. For Michelle and Donna, Patricia's story is a reminder that while advocacy and making a difference are important, so is finding balance and prioritising experiences and memories we create along the way 🩵 Follow Ollie on Instagram: @wheeliefunnyguy Hosted by: Michelle Pomeroy & Donna Anderton Guest: Patricia McPhail Produced & Edited by: Thomas Shaw Music licensed through Soundstripe. Code: PN8MRGBXHWXJU5NG 💜🩵

  2. Oct 23

    Facing Duchenne with Honesty: Megan's Story | Duchenne Connections S2 E4 

    🎙️ Facing Duchenne with Honesty: Megan's Story | Duchenne Connections S2 E4  Content Note: This episode includes conversations about death, end-of-life and grief as part of the lived experience of Duchenne. We encourage listeners to consider whether now is the right time to engage with these topics.  Every family's Duchenne journey looks different. In this episode, they are joined by Megan, mum to Emma and Jackson, who has Duchenne. Megan shares her family's unexpected pathway to diagnosis, from initially navigating developmental differences and an autism diagnosis to eventually learning that Jackson had Duchenne at seven years old.  Join the conversation as Megan reflects on the importance of honesty throughout her journey, particularly when seeking answers from medical professionals and navigating difficult conversations with her children. She also shares how her professional experience as a mortician has shaped her understanding of death and grief, and inspired her passion project, Consultancy for End of Life, as a way of supporting others to approach conversations that can often feel too difficult to have.  Looking back, Megan reflects on the importance of facing the realities of Duchenne while still finding joy in the present, and how honesty, even when difficult, can help families navigate the journey ahead.  For Donna and Michelle, one thing stuck with them this episode, and it something so simple but powerful: honesty is beautiful. 💜🩵  Learn more about Consultancy for End of Life:  https://www.facebook.com/profile.php?id=61592409658982  Hosted by:  Michelle Pomeroy & Donna Anderton  Guest:  Megan Tombs  Produced & Edited by:  Thomas Shaw  Music licensed through Soundstripe. Code: YLXSSQJYMCQWMFO1 💜🩵

  3. Oct 16

    Finding Joy in Every Moment: Leigh & Belinda's Story | Duchenne Connections S2 E3

    🎙️ Finding Joy in Every Moment: Leigh & Belinda's Story | Duchenne Connections S2 E3  Every family's Duchenne journey looks different. In Season 2, Michelle and Donna are opening the conversation to different people in the Duchenne community to share their own stories and perspectives.  In this episode, they are joined by Leigh and Belinda, parents of four children. Leigh and Belinda have big family with three sons with Duchenne and a daughter who is a carrier. In this episode, they share their unique experience of navigating this family dynamic. Their story of multiple diagnosis and how they navigated this journey is one you won't want to miss.  Join the conversation as Leigh and Belinda reflect on the realities of raising three sons with Duchenne. They have an honest conversation about these realities - from transport and family holidays to navigating school, increasing needs and the transition into adulthood. It is within this conversation they unpack the importance of letting others in, finding support for themselves as parents and how they create an environment where each of their children can continue to pursue their own goals despite the hurdles they may face.  Looking back, Michelle, Donna, Leigh & Belinda reflect on how their focus has changed within each of their journey's, moving away from wanting to “fix” everything and towards prioritising acceptance. For each of them, finding freedom through appreciating the good moments while acknowledging that the hard days being part of the journey too has been one of their biggest moments.  Leigh & Belinda's story can help everyone in the Duchenne community to take a moment and consider the power of finding the joy in every moment even in the face of hardship 💜🩵  Hosted by:  Michelle Pomeroy & Donna Anderton  Guests:  Leigh & Belinda Shorter Produced & Edited by:  Thomas Shaw  Music licensed through Soundstripe. Code: PESSERWGVZZ6PPRU

  4. Oct 9

    Memories and Moments: Chris' Story | Duchenne Connections S2 E2

    🎙️ Memories and Moments: Chris' Story | Duchenne Connections S2 E2  Every family's Duchenne journey looks different. In Season 2, Michelle and Donna are opening the conversation to different people in the Duchenne community to share their own stories and perspectives.  In this episode, they are joined by their very first guest, Chris Burton. Chris is a dad of two children, including Milo, his 13 year old son with Duchenne. Chris shares his experience of navigating Duchenne as a dad, from knowing something was different shortly after Milo's birth, through to diagnosis and adjusting to what life with Duchenne would mean for him and his family.  Join the conversation as Chris reflects on finding community, navigating fatherhood, making space for difficult conversations and learning to trust himself along the way. He also shares how his family's early decision to focus on creating “memories and moments” has continued to shape their journey.  Through the challenges and many different changes, this conversation with Chris can help us all think about making the most of life with Duchenne and how important it is to remember that there is always two sides to every coin💜🩵  Hosted by:  Michelle Pomeroy & Donna Anderton  Guest:  Chris Burton  Produced & Edited by:  Thomas Shaw  Music licensed through Soundstripe.  Code: E4IQP9JP9RHHT7QK, DXC0VZP8R1SGPW6L

  5. Oct 6 ·  Bonus

    Have Your Say: Duchenne Families' Experiences with the NDIS | Duchenne Connections Bonus Content

    🎙️ Have Your Say: Duchenne Families' Experiences with the NDIS | Bonus Content  In this bonus episode of Duchenne Connections, Michelle and Donna share what has been happening behind the scenes as families continue to navigate changes within the NDIS and the challenges of accessing the right supports at the right time.  They wanted to share more about the work being done by the sponsor of this podcast, DMD Therapeutic & Behavioural Consulting, to support families in the community in navigating the NDIS. With this, they discuss the Duchenne Families' Experiences with the NDIS Survey, a community initiative developed collaboratively with families and professionals from within the Duchenne community.  The survey aims to capture the experiences of Duchenne families across Australia navigating the NDIS. The outcomes of the survey will be used to build evidence to support advocating for a better understanding of Duchenne and more proactive decision-making within the NDIS.  If you have a person with Duchenne in your family, we encourage you to have your say. The more families who contribute, the stronger the picture we can build of our community's experiences.  💜 Complete the Duchenne Families' Experiences with the NDIS survey:  https://forms.cloud.microsoft/Pages/ResponsePage.aspx?id=AbJf9TO0SEmPR2nvriNrBaHJmZsJfnlDrLPxCNtr_FtURjE1SDBBNFI0TlE4R1hBQVlGWU02SU9MUS4u  Hosted by:  Michelle Pomeroy & Donna Anderton  Produced & Edited by:  Thomas Shaw  Music licensed through Soundstripe.  Code: OOROYRFM5Z9YJAPV, TKL4IASHUD0HW5EO  💜🩵

  6. Oct 2

    Planning for Life with Duchenne | Duchenne Connections S2 E1

    🎙️ Planning for Life with Duchenne | Duchenne Connections Season 2 Premiere  Season 2 of Duchenne Connections is here! This season is all about diverse families in Duchenne and Michelle and Donna welcome everyone for the premiere.  Duchenne can make even the most exciting plans feel complicated. Plans for birthdays bring mixed emotions, while others like holidays often mean a lot more preparation than most people realise. And, even with all this planning, life often finds a way to throw hurdles in the way. Life with Duchenne is all about learning how to plan for what you can, and accepting those things that you can't control.  In this episode, Michelle and Donna catch up and talk about the last few months. They reflect on all that goes into creating meaningful experiences for their families while still holding space to honour what their children actually want from those moments.  They also reflect on the challenge of stepping back as a Duchenne parent and working through complex feelings of responsibility when learning how to accept help from those around them.  They share the realities of planning for life with Duchenne, including how hard it can be when something you've worked so hard to organise doesn't go to plan. And, on the flip side, they talk about the other times when everything does come together you genuinely feel the experience you worked so hard to make possible.  Season 2 of Duchenne Connections is here!💜  Hosted by:  Michelle Pomeroy & Donna Anderton  Produced & Edited by:  Thomas Shaw  Music licensed through Soundstripe.  Code: HBPMHCRTD3YKEECK, SQ8HTCSBDTK0XVU8  💜🩵

  7. Aug 7

    Managing Grief & Having Conversations About Duchenne | Duchenne Connections Episode 8 

    🎙️Managing Grief & Having Conversations About Duchenne | Duchenne Connections Episode 8  Content Note: This episode includes conversations about end-of-life & death as part of the lived experience of Duchenne. We encourage listeners to consider whether now is the right time to engage with these topics.  As Duchenne parents, it can be difficult to balance what is known about the future with what our children need to know in the present. Alongside this is the reality of navigating anticipatory grief while trying to make the most of the younger years.  In Episode 8 of Duchenne Connections, Michelle and Donna reflect on how they approached conversations about Duchenne with their own children in these years. Join them as they explore the importance of being honest in supporting children to understand their own journey, and the how they came to a realisation that the fear of these conversations often sits more with grieving parents than with the children themselves.  It is through this conversation they unpack the realities of anticipatory grief, the importance of looking after yourself as a parent, and why embracing the present can help families find quality of life alongside the challenges of Duchenne.   Check out the book mentioned in this week's episode - That's What Wings Are For by Patrick Guest: https://www.dymocks.com.au/thats-what-wings-are-for-by-patrick-guest-and-daniella-germain-9781760501471  This episode marks the end of Season 1 of Duchenne Connections. Thank you for joining us throughout these first eight episodes. While we take a short break, stay tuned for bonus content, highlights from Season 1, and updates as we prepare for Season 2. We can't wait to continue the conversation with you 💜  Hosted by:  Michelle Pomeroy & Donna Anderton  Produced & Edited by:  Thomas Shaw  Music Attribution:  5JMIXB9CSDV4LHTS  VBTGZQXPUL7Z20LD  💜🩵

  8. Jul 31

    Research, Trials & Quality of Life in Duchenne | Duchenne Connections Episode 7

    🎤Research, Trials & Quality of Life in Duchenne | Duchenne Connections Episode 7  Research continues to shape the future of Duchenne bringing hope to families around the world. But alongside that hope comes many feelings of uncertainty and challenges in balancing tomorrow with today.  In episode 7 of Duchenne Connections, Michelle and Donna reflect on their own experiences navigating clinical trials and their understanding what this meant for their families. They discuss the realities of participating in trials and the emotional ups and downs that can come with this, as well as how they now look back and see research & hope for a "fix" as just one small part of their journey and not the only focus.  Join the conversation as they reflect on how they now prioritise quality of life at the centre of each of their lives. From this they consider that, while hope for future advances is important, so too is creating meaningful experiences that bring quality of life for the whole family, regardless of where someone is in their Duchenne Journey.  For more information about clinical trials and research in Australia, visit the Australian Neuromuscular Disease Registry at www.australiannmdregistry.org.au  Hosted by:  Michelle Pomeroy & Donna Anderton  Produced & Edited by:  Thomas Shaw  Music Attribution:  7YI4YZCQLMTSSG30  2I1SAMBVJKW2RVTT  💜🩵   #duchenne #DMD #duchennemusculardystrophy #DisabilityPodcast #duchenneawareness #disabilityawareness #MuscularDystrophyAwareness

See All (16)

About

The podcast where lived experience meets real conversation. Join Michelle Pomeroy and Donna Anderton as they explore the Duchenne journey through honest stories and shared experiences that connect our community.

Information

  • Creator
    Duchenne Connections
  • Years Active
    2026
  • Episodes
    16
  • Rating
    Explicit
  • Copyright
    © 2026 Duchenne Connections
  • Show Website
    Duchenne Connections