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 

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 

💜🩵 

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 

💜🩵 

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: 
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💜🩵 

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 

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#duchenne #DMD #duchennemusculardystrophy #DisabilityPodcast #duchenneawareness #disabilityawareness #MuscularDystrophyAwareness 

Genetics can answer some questions, but it can also bring new ones. 

In episode 6 of Duchenne Connections, Michelle and Donna explore what it means to be a carrier of Duchenne. Join them in reflecting on the different paths families take after a Duchenne diagnosis as their share their own experiences of genetic testing & the emotions that came with it, including how they had to through the feelings of guilt, responsibility and grief that can come with carrying the Duchenne gene.  

They discuss what a manifesting carrier is, the importance of all Duchenne parents looking after their own health, and the reality that no two families are the same when it comes to future pregnancies or family planning. The conversation also explores the wider impact on families, including siblings and their own journeys in finding identity and daughters navigating the possibility of being carriers themselves. 

Throughout the episode, Michelle and Donna return to the well-known Welcome to Holland metaphor, taken from a poem they first shared in the early episodes about adjusting to a new life when you face an unexpected journey.

Join the conversation as they reflect on how every family's story is different, and when talking genetics in Duchenne, there are no right or wrong decisions, only choices that feel right for each family. 
Hosted by: 
Michelle Pomeroy & Donna Anderton 
Produced & Edited by: 
Thomas Shaw 

Music Attribution:

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💜🩵 
#duchenne #DMD #duchennemusculardystrophy #DisabilityPodcast #duchenneawareness #disabilityawareness #MuscularDystrophyAwareness

🎙️ Socialisation & Making the Most of the Younger Years | Duchenne Connections Episode 5 

In Episode 5 of Duchenne Connections, Michelle and Donna reflect on the importance of creating opportunities for children with Duchenne to socialise & explore their interests as they make the most of the younger years. 

Together, they discuss hey they navigated friendships, holidays and activities with others, all while managing the challenges that can come with balancing behaviours, equipment needs, changing abilities and more. They also share how they learnt to adapt rather than stop, using their children's interests to create meaningful opportunities even when things felt hard, and the benefit of embracing the support available through charities and the wider Duchenne community. 

Join the conversation as they reflect on the importance of not letting fear get in the way of new experiences when making the most of each stage of the journey. 

Hosted by: 
Michelle Pomeroy & Donna Anderton 

Produced & Edited by: 
Thomas Shaw 

Music Attribution: 
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#duchenne #DMD #duchennemusculardystrophy #DisabilityPodcast #duchenneawareness #disabilityawareness #MuscularDystrophyAwareness 

In Episode 4 of Duchenne Connections, Michelle and Donna reflect on attending conferences after a diagnosis and the story of how they met.

Together, they discuss these early experiences from meeting other families to forming meaningful connections with both the community and healthcare professionals. They consider balancing the positives of these experiences with the confronting nature of diving in head first straight after a diagnosis. They also explore how they now look back and understand Duchenne beyond its physical impacts, including behaviour, communication and cognitive fatigue.

Throughout the conversation, they reflect on balancing the need to prepare for the future while still embracing the present, and how this helps in set you off on the right path in those early years with strong connections around you.

Hosted by:
Michelle Pomeroy & Donna Anderton

Produced & Edited by:
Thomas Shaw

Music Attribution:
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💜🩵

#duchenne #DMD #duchennemusculardystrophy #DisabilityPodcast #duchenneawareness #disabilityawareness #MuscularDystrophyAwareness

In Episode 3 of Duchenne Connections, Michelle and Donna reflect on the years immediately following a Duchenne diagnosis, exploring how family life changed as they adjusted to a new reality.

Together, they discuss balancing work and caring responsibilities, the impact of diagnosis on the whole family, changing priorities, building support networks, and the importance of accepting help when it was needed. Through their lived experiences, they share an honest conversation about navigating the early years and finding their feet after diagnosis.

Hosted by:
Michelle Pomeroy & Donna Anderton

Produced & Edited by:
Thomas Shaw

Music Attribution:
EMH2KAOHUPMVH0Z9
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💜🩵

#duchenne #DMD #duchennemusculardystrophy #DisabilityPodcast #duchenneawareness #disabilityawareness #MuscularDystrophyAwareness

In the second episode of Duchenne Connections, Donna shares the story of her son's journey from birth through to receiving a diagnosis of Duchenne muscular dystrophy.

Together, Donna and Michelle discuss the early signs that something may have been different, the medical professionals involved along the way, the process of seeking answers and the impact this period had on their family. They also explore the broader impact of a Duchenne diagnosis on the whole family and how this shaped her journey moving forward.

Hosted by:
Michelle Pomeroy & Donna Anderton

Produced & Edited by:
Thomas Shaw

Music Attribution:
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💜🩵

#Duchenne #DMD #DuchenneMuscularDystrophy #DuchenneConnections #DisabilityPodcast

In the first episode of Duchenne Connections, Michelle shares the story of her son Jack's journey from birth through to receiving a diagnosis of Duchenne muscular dystrophy.

Together, Michelle and Donna discuss the early signs that something may have been different, the medical professionals involved along the way, the process of seeking answers, and the impact this period had on their family. They also reflect on the importance of the connections formed during this time, many of which continue to be an important part of their lives today.

📖 Lightbulb Moment Resource

In this episode, Michelle's Lightbulb Moment references the poem Welcome to Holland by Emily Perl Kingsley:

https://www.emilyperlkingsley.com/welcome-to-holland

Hosted by:
Michelle Pomeroy & Donna Anderton

Produced & Edited by:
Thomas Shaw

Music Attribution:
KWDIUCGEMVL0VBNI
XJGNPCGRRL3OJYFQ

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#Duchenne #DMD #DuchenneMuscularDystrophy #DuchenneConnections #DisabilityPodcast

In this short trailer, you’ll meet 2/2 of our hosts, Michelle Pomeroy. Join her as she shares a little about herself and her background, as well as what she’s looking forward to sharing as the podcast grows 💜🩵

Stay tuned for news about our official launch date and more information on what’s to come!

#DuchenneMuscularDystrophy
#Duchenne
#DMD
#DisabilityPodcast
#NDIS

In this short trailer, you’ll meet 1/2 of our hosts, Donna Anderton. Join her as she shares a little about herself and her background, as well as what she’s looking forward to sharing as the podcast grows 💜🩵

Stay tuned for our next trailer coming soon, where you’ll meet our second host, Michelle Pomeroy.

#DuchenneMuscularDystrophy
#Duchenne
#DMD
#DisabilityPodcast
#NDIS