You, Me & Rare Disease ep. 2 of 2 acknowledging International Rare Disease Day 28th February

On You, Me & Rare Disease episode 2 of 2 we feature insights from Carly Findlay, OAM,  Clare Reilly and Leanne Watson.

Their personal experiences with rare diseases of LGMD, MS, Ichthyosis, and Cancer.

They emphasise the importance of awareness, community support, and the need for dedicated Rare Diseases Day to foster understanding and solidarity.

 GUEST LINKS

Carly Findlay

https://carlyfindlay.com.au/hire-me/

https://www.instagram.com/carlyfindlay/

Clare Reilly

https://www.wheelchairmeetswilderness.org

https://www.instagram.com/clare.reilly/

Leanne Watson

https://www.leanneSWHEellife.com

https://www.instagram.com/leannes_wheel_life/

 MUSIC

Music: Without You by Declan DP License: https://license.declandp.info Free Download / Stream: https://audiolibrary.com.co/declan-dp...Music promoted by Audio Library:    • DAILY No Copyright For You – Without You b...  

CHAPTERS

01:05 Introduction to Carly Findlay and Her Advocacy

06:11 Living with Ichthyosis: Challenges and Experiences

10:30 Navigating the Medical System with Rare Diseases

15:07 The Importance of Rare Diseases Day and Community Support

16:14 Introduction to Rare Diseases and MS

18:37 Understanding Multiple Sclerosis

21:18 Living with a Rare Disease

23:13 The Importance of Rare Diseases Day

23:47 Understanding Limb Girdle Muscular Dystrophy

29:22 The Impact of Living with a Rare Disease

Welcome to You, Me & Rare Disease episode 1 of 2 – as a special breakout theme to You Me & Muscular Dystrophy to acknowledge rare diseases day 28th of February.

We begin this fabulous series with with a discussion with from Nicole Millis, CEO of Rare Voices Australia. Kathleen Benham, Kelly Berger, Avery Roberts

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.

The following 2 episodes provide great perspectives from fabulous people.

 LINKS PER GUEST

Nicole MillIS, CEO,  Rare Voices Australia

https://rarevoices.org.au

https://www.instagram.com/rarevoicesaustralia/

University of New South Wales - Rare Disease Education Program - https://www.unsw.edu.au/

Elhers Danlos Syndrome - https://www.ehlers-danlos.com/

Australian Government - Rare Disease Policy - https://www.health.gov.au/

Kathleen Benham, Neuroendocrine Cancer

https://neuroendocrine.org.au

Elhers Danlos Syndrome - https://www.ehlers-danlos.com/

Kelly Berger and Avery Roberts, Congenital muscular dystrophy

https://www.youtube.com/channel/UCwiodJfv-W6ZhMinq4Ft1Rw

https://www.instagram.com/thewheeltalkpodcast/

Leah Alstin, Friedrich’s Ataxia

https://www.instagram.com/being_leah/

MUSIC

Music: Without You by Declan DP License: https://license.declandp.info Free Download / Stream: https://audiolibrary.com.co/declan-dp...Music promoted by Audio Library:    • DAILY No Copyright For You – Without You b...  

CHAPTERS

00:00 Understanding Rare Diseases

01:11 What is a rare disease?

02:09 The Role of Rare Voices Australia

04:54 Educating medical clinicians

06:39 What is the definition of the term disease?

08:10 Rare diseases day - raising awareness of rare disease to policymakers

12:52 What is Neuroendocrine Cancer ?

14:52 Gaslighting and the need for training in the medical profession

18:16 Impact of her rare disease by Kathleen

20:33 The importance of a rare disease day from Kathleen 

24:57 Congenital muscular dystrophy

27:24 Life with a rare disease by Kelly and Avery

27:53 The impacts of rare disease for Kelly and Avery

30:26 The importance of rare disease day by Kelly and Avery

33:40 Friedrichs Ataxia

38:45 The impacts of living with rare disease by Leah

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.

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

In this thoughtful and insightful podcast episode, we dive into the world of resilience and personal growth with the talented Chris Anselmo. Known for his articulate and vulnerable writing and public speaking on overcoming challenges, Chris shares his journey and the lessons he has learned along the way. This conversation is a must-listen for anyone looking to find strength in adversity regardless of your challenge..

Newsletter

https://helloadversity.substack.com/

Instagram

@hello_adversity

Useful Links

https://www.jain-foundation.org

https://rarediseases.org/navigating-adversity-through-writing-an-interview-with-chris-anselmo/

Tugba is warm and bright person who shares how she broke out of her self-imposed bubble to live life fully and autonomously while living with congenital muscular dystrophy from birth. 

She is now setting and achieving many of her goals, including travel, and discusses what travelling means to those of us who use a wheelchair as an extension of ourselves.

This conversation is well worth listening to as Tugba imparts such wisdom as not letting health challenges dictate one's dreams and passions, encouraging others to pursue their goals and to be a voice for those facing similar challenges.

SHOW NOTES and LINKS

Tugba’s Blog MDA

https://www.mda.org.au/muscular-dystrophy/posts/tugbas-blog-travelling-to-dubai-with-md

People of Determination Dubai

https://legal.dubai.gov.ae/en/services/Pages/disabilities.aspx

In this conversation, Leanne Watson speaks with Joshua Ruff, a young man in charge of his life, creatively designing and showcasing his beautiful Henle Gardens while living with Duchenne muscular dystrophy . 

Joshua generously shares his journey from diagnosis at age five, his life changing cardiac arrest and the joy and pleasure he derives from his immersion in nature.

Joshua has a deep gratitude for his large and supportive family and community.

This conversation is full of hopefulness and a humble energy that is truly heartening

NOTES AND RESOURCES

https://www.abc.net.au/gardening/how-to/my-garden-path-joshua-ruff/105382674

https://www.instagram.com/henlegardens/

https://www.instagram.com/joshuaruff19/

 Chapters

00:00 Introduction to Joshua Ruff and His Journey

02:47 Living with Duchenne Muscular Dystrophy

05:55 Family Support and Community Connections

08:52 Life Changes and Personal Growth

11:55 Gardening as a Source of Joy

14:38 Designing Henley Gardens

17:32 Public Engagement and Community Feedback

20:40 Pivotal Moments and Life Perspectives

23:39 Finding Hope and Joy

26:31 Travel and Accessibility

29:14 Advice for the Newly Diagnosed

Creative and eloquent Tayla Richardson has Congenital Myasthenic Syndrome. A rare neuro muscular disorder that presents quite similarly to many muscular dystrophies and therefore is worth sharing on You, Me & Muscular Dystrophy.

Having hundreds of periods of paralysis from her teenage years Tayla shares her unique experiences coping with a new diagnosis, working with the waves of grief, setting boundaries and exploring and honing her creativity.

Tayla has an inspirational attitude and great advice to others who may be newly diagnosed or caring for someone in that situation.

NOTES AND RESOURCES

 MDA – Muscular Dystrophy Australia - https://www.mda.org.au

 A Slight Change Of Plans podcast.    https://www.pushkin.fm/podcasts/a-slight-change-of-plans

 I Think Therefore I slam Podcast - https://podcasts.apple.com/au/podcast/i-think-therefore-i-slam/id1747139808

 The Growing Space.  https://www.thegrowingspace.com.au/

 Rare Voices Australia   https://rarevoices.org.au

 MORE OF TAYLA HERE

 ‘Dandelion Bouquet’ Short film: https://www.focusonability.com.au/FOA/films/3771.html 

‘Amorphous’ Short film: https://vimeo.com/1078856803

Emerging Writer’s Festival Panel: emergingwritersfestival.org.au/event/where-do-you-get-your-ideas/

Sample of spoken word Poetry: https://www.youtube.com/shorts/XmC0YtnRb7w

Russh Magazine (poetry) as finalist for Literary Showcase: https://www.russh.com/wp-content/uploads/2024/04/The_string_that_goes_unseen__excerpt_.pdf

Article in HireUP: https://hireup.com.au/news/in-the-midst-of-a-pandemic-time-is-precious-for-those/?fbclid=PAZXh0bgNhZW0CMTEAAad6iCIP3gxeHPiEzlcZ4E8ZQtuaqReuDt6fcBZQz_5o1rGFaiRvFKM-Auj3VA_aem_i-pdThP0WQ2w7N2QmEB42g

As a guest on podcasts ‘ListenABLE’ with Dylan Alcott and ‘I think Therefore I Slam’. 

https://www.youtube.com/watch?v=WwnICEj1ObU&feature=youtu.be

https://podcasts.apple.com/au/podcast/patreon-preview-tayla-richardson-ambiguous-loss-unequivocal/id1747139808?i=1000716533890

Diagnosed at age 35 vibrant Paul Bugeja shares his personal journey with Facioscapulohumeral Muscular Dystrophy (FSHD). 

In this conversation with humour and enthusiasm Paul reflects on the signs of FSHD that were present in his childhood, the importance of exercise, and how he views his condition as an opportunity for growth rather than an obstacle. 

Paul emphasises the significance of embracing uncertainty, finding joy in ‘collecting souls’, his involvement in advocacy organisations while sharing his journey of writing a book about his experiences with FSHD. 

SHOW NOTES

FSHD Global https://fshdglobal.org

Muscular Dystrophy Australia  https://www.mda.org.au

Muscular Dystrophy Queensland  https://mdqld.org.au

Muscular Dystrophy Foundation Australia https://mdaustralia.org.au

In this conversation, Leanne speaks with the delightful Shae Mankey about her experiences living with Facioscapulohumeral Muscular Dystrophy (FSHD). They discuss Shae’s career transition to Accessible Accommodation, the impact of childhood disability on her dreams and future aspirations. Shae speaks about the decision not to have children and her love for her husband, family and dog, ending with great advice for those newly diagnosed with muscular dystrophy.

SHOW NOTES

Accessible Accommodation

https://www.accessibleaccommodation.com/

The Accessible Group – Facebook 

https://www.facebook.com/groups/accessiblegroup

In this conversation, Leanne and her husband Gary Watson discuss the profound impact of Leanne's neurological muscle wasting disease (LGMD) on their marriage and lives. They explore themes of resilience, adaptation, and the importance of communication in navigating health challenges.

Gary shares insights on the unpredictability of life, the lessons learned from their journey, and the hope he finds in the goodness of people. They also touch on the significance of self-care for caregivers and the role of technology in their daily lives.