by Leannes Wheel Life
Exploring muscular dystrophy one story at a time. Sharing the lives of the wonderful people that make up the muscular dystrophy community in my unique podcast series talking to people, their families and caregivers that live with the many forms of muscular dystrophy. If you or anyone you know would like to be involved in this podcast, I'd love to hear from you. My contact details will be in the notes below and I'm also on Instagram and Facebook under Leanne's Wheel Life.
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Publishing Since
8/31/2025
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February 28, 2026
<p>You, Me & Rare Disease ep. 2 of 2 acknowledging International Rare Disease Day 28th February</p><p> </p><p>On You, Me & Rare Disease <strong>episode 2 of 2</strong> we feature insights from Carly Findlay, OAM, Clare Reilly and Leanne Watson.</p><p>Their personal experiences with rare diseases of LGMD, MS, Ichthyosis, and Cancer.</p><p>They emphasise the importance of awareness, community support, and the need for dedicated Rare Diseases Day to foster understanding and solidarity.</p><p> <strong>GUEST LINKS</strong></p><p> </p><p><strong>Carly Findlay</strong></p><p><a href="https://carlyfindlay.com.au/hire-me/"><strong>https://carlyfindlay.com.au/hire-me/</strong></a><strong></strong></p><p><a href="https://www.instagram.com/carlyfindlay/"><strong>https://www.instagram.com/carlyfindlay/</strong></a><strong></strong></p><p><strong> </strong></p><p><strong>Clare Reilly</strong></p><p><strong> </strong></p><p><a href="https://www.wheelchairmeetswilderness.org/"><strong>https://www.wheelchairmeetswilderness.org</strong></a><strong></strong></p><p><a href="https://www.instagram.com/clare.reilly/"><strong>https://www.instagram.com/clare.reilly/</strong></a><strong></strong></p><p><strong> </strong></p><p><strong>Leanne Watson</strong></p><p><a href="https://www.leanneswheellife.com/"><strong>https://www.leanneSWHEellife.com</strong></a><strong></strong></p><p><a href="https://www.instagram.com/leannes_wheel_life/"><strong>https://www.instagram.com/leannes_wheel_life/</strong></a><strong></strong></p><p><strong> </strong></p><p><strong> MUSIC</strong></p><p>Music: Without You by Declan DP License: <a href="https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqazZKc0o4aHlXLU1ad1U0WXFPRTNMdVZCTmZyUXxBQ3Jtc0ttdUJyNGdyS1Z2QlVFbkpBTG9ZWVZEQ2stX3FvMUk2bW5oWVhta195VzdyLUxqXy12QmJjRjVWNVZGb2w5NFFiRlhYUHJUTVFaYzI5MGl0MkZib2Z1WjkzbmJ1NEYtd1BhTW5mQmRHVk1LMThwRmJtRQ&q=https%3A%2F%2Flicense.declandp.info%2F&v=6-ldl4447KM" target="_blank">https://license.declandp.info</a> Free Download / Stream: <a href="https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbUlpNThwQ1BUNjRIRnYzb1lVN2ZfR29QSHRod3xBQ3Jtc0trUzZrY3lZZ1BiZVd3MHVDckFJZ3VZUFZScHd4bFNTaVJiQkgtR2tCLTJ6NS14cFNUYkFoSW95S3VIR2FfV3A3SS0tQU9pdTNEdkg1eUZ6aUhXblFibXExSzVYQmQzOEV4Xy13WVZCM05CSVNQZ2g2UQ&q=https%3A%2F%2Faudiolibrary.com.co%2Fdeclan-dp%2Fwithout-you&v=6-ldl4447KM" target="_blank">https://audiolibrary.com.co/declan-dp...</a>Music promoted by Audio Library: <a href="https://www.youtube.com/watch?v=6-ldl4447KM"> • DAILY No Copyright For You – Without You b... </a></p><p> </p><p> </p><p><strong>CHAPTERS</strong></p><p> </p><p>01:05 Introduction to Carly Findlay and Her Advocacy</p><p>06:11 Living with Ichthyosis: Challenges and Experiences</p><p>10:30 Navigating the Medical System with Rare Diseases</p><p>15:07 The Importance of Rare Diseases Day and Community Support</p><p>16:14 Introduction to Rare Diseases and MS</p><p>18:37 Understanding Multiple Sclerosis</p><p>21:18 Living with a Rare Disease</p><p>23:13 The Importance of Rare Diseases Day</p><p>23:47 Understanding Limb Girdle Muscular Dystrophy</p><p>29:22 The Impact of Living with a Rare Disease</p>
February 27, 2026
<p>Welcome to You, Me & Rare Disease <strong>episode</strong> <strong>1 of 2</strong> – as a special breakout theme to You Me & Muscular Dystrophy to acknowledge rare diseases day 28th of February.</p><p>We begin this fabulous series with with a discussion with from Nicole Millis, CEO of Rare Voices Australia. Kathleen Benham, Kelly Berger, Avery Roberts</p><p>and Leah Alstin share personal insights on living with the rare conditions of endocrine cancer, congenital muscular dystrophy, and Frederichs Ataxia. It highlights the systemic challenges faced by rare disease patients, the importance of awareness and advocacy in rare diseases.</p><p>The following 2 episodes provide great perspectives from fabulous people.</p><p> <strong>LINKS PER GUEST</strong></p><p><strong>Nicole MillIS, CEO, Rare Voices Australia</strong></p><p> </p><p>https://rarevoices.org.au</p><p> </p><p><a href="https://www.instagram.com/rarevoicesaustralia/">https://www.instagram.com/rarevoicesaustralia/</a></p><p> </p><p>University of New South Wales - Rare Disease Education Program - https://www.unsw.edu.au/</p><p>Elhers Danlos Syndrome - https://www.ehlers-danlos.com/</p><p> </p><p>Australian Government - Rare Disease Policy - https://www.health.gov.au/</p><p> </p><p> </p><p><strong>Kathleen Benham, Neuroendocrine Cancer</strong></p><p> </p><p><a href="https://neuroendocrine.org.au/">https://neuroendocrine.org.au</a></p><p> </p><p>Elhers Danlos Syndrome - https://www.ehlers-danlos.com/</p><p> </p><p> </p><p><strong>Kelly Berger and Avery Roberts, Congenital muscular dystrophy</strong></p><p> </p><p><a href="https://www.youtube.com/channel/UCwiodJfv-W6ZhMinq4Ft1Rw">https://www.youtube.com/channel/UCwiodJfv-W6ZhMinq4Ft1Rw</a></p><p> </p><p><a href="https://www.instagram.com/thewheeltalkpodcast/">https://www.instagram.com/thewheeltalkpodcast/</a></p><p> </p><p><strong>Leah Alstin, Friedrich’s Ataxia</strong></p><p><a href="https://www.instagram.com/being_leah/">https://www.instagram.com/being_leah/</a></p><p> </p><p> </p><p> </p><p><strong>MUSIC</strong></p><p> </p><p>Music: Without You by Declan DP License: <a href="https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqazZKc0o4aHlXLU1ad1U0WXFPRTNMdVZCTmZyUXxBQ3Jtc0ttdUJyNGdyS1Z2QlVFbkpBTG9ZWVZEQ2stX3FvMUk2bW5oWVhta195VzdyLUxqXy12QmJjRjVWNVZGb2w5NFFiRlhYUHJUTVFaYzI5MGl0MkZib2Z1WjkzbmJ1NEYtd1BhTW5mQmRHVk1LMThwRmJtRQ&q=https%3A%2F%2Flicense.declandp.info%2F&v=6-ldl4447KM" target="_blank">https://license.declandp.info</a> Free Download / Stream: <a href="https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbUlpNThwQ1BUNjRIRnYzb1lVN2ZfR29QSHRod3xBQ3Jtc0trUzZrY3lZZ1BiZVd3MHVDckFJZ3VZUFZScHd4bFNTaVJiQkgtR2tCLTJ6NS14cFNUYkFoSW95S3VIR2FfV3A3SS0tQU9pdTNEdkg1eUZ6aUhXblFibXExSzVYQmQzOEV4Xy13WVZCM05CSVNQZ2g2UQ&q=https%3A%2F%2Faudiolibrary.com.co%2Fdeclan-dp%2Fwithout-you&v=6-ldl4447KM" target="_blank">https://audiolibrary.com.co/declan-dp...</a>Music promoted by Audio Library: <a href="https://www.youtube.com/watch?v=6-ldl4447KM"> • DAILY No Copyright For You – Without You b... </a></p><p> </p><p><strong>CHAPTERS</strong></p><p>00:00 Understanding Rare Diseases</p><p>01:11 What is a rare disease?</p><p>02:09 The Role of Rare Voices Australia</p><p>04:54 Educating medical clinicians</p><p>06:39 What is the definition of the term disease?</p><p>08:10 Rare diseases day - raising awareness of rare disease to policymakers</p><p>12:52 What is Neuroendocrine Cancer ?</p><p>14:52 Gaslighting and the need for training in the medical profession</p><p>18:16 Impact of her rare disease by Kathleen</p><p>20:33 The importance of a rare disease day from Kathleen </p><p>24:57 Congenital muscular dystrophy</p><p>27:24 Life with a rare disease by Kelly and Avery</p><p>27:53 The impacts of rare disease for Kelly and Avery</p><p>30:26 The importance of rare disease day by Kelly and Avery</p><p>33:40 Friedrichs Ataxia</p><p>38:45 The impacts of living with rare disease by Leah</p><p> </p>
February 15, 2026
<p>Avery Roberts and Kelly Berger discuss with passion, humour and thoughtful insight about how they drive, dance and thrive through life with Congenital Muscular Dystrophy.We talk about adaptive driving, making dance history, mentoring, podcasting and more.Kelly and Avery have an admirable strength and energy that you can't help but be inspired by.</p><p><br></p><p>SHOW NOTES, LINKS & RESOURCEShttp://ladieslivingrare.com/wheel-talk-podcast https://www.facebook.com/TheWheelTalkPodcast/https://www.instagram.com/thewheeltalkpodcasthttps://www.youtube.com/@TheWheelTalkPodcast https://www.tiktok.com/@thewheeltalkpodcreators.spotify.com/pod/show/thewheeltalkpodcasthttps://podcasts.apple.com/us/podcast/wheel-talk-with-kelly-and-avery-podcast/id1836473324<br></p><p><br></p>
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Exploring muscular dystrophy one story at a time.
Sharing the lives of the wonderful people that make up the muscular dystrophy community in my unique podcast series talking to people, their families and caregivers that live with the many forms of muscular dystrophy.
If you or anyone you know would like to be involved in this podcast, I'd love to hear from you. My contact details will be in the notes below and I'm also on Instagram and Facebook under Leanne's Wheel Life.
This podcast updates daily.
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