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Iss rare disease journeImagine waking up every day knowing even a light touch could cause your skin to tear or blister. That’s the reality for children and adults living with Recessive Dystrophic Epidermolysis Bullosa (RDEB) — a severe rare genetic condition where skin and mucous membranes are extremely fragile. In this episode of Rare Connection, host Joanna speaks with Professor Mark Lowdell — Chief Scientific Officer & Co-Founder of INmune Bio and Professor of Cell & Tissue Therapy at University College London — about a promising cell therapy called CORDStrom™, developed for RDEB and currently progressing through clinical development.
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We discuss
🔹 What RDEB is and how it affects daily life and long-term health
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🔹 The science behind CORDStrom™ and its clinical trial results in pediatric RDEB patients
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🔹 What it means to prepare a Biologics License Application (BLA) submission to the FDA and future regulatory milestones
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🔹 The human stories behind the research and why this work matters for families living with rare disease

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📌 Join the Addaotuve Kitchen Facebook Group — for people navigating multiple diets and shared meal ideas. https://www.facebook.com/groups/13943332754051

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In this episode of Rare Connection, Joanna sits down with writer, photographer, paraeducator, and disability advocate Michelle Steiner to talk about life with dyscalculia, an often-misunderstood learning disability that affects number sense and math.

Michelle shares her journey from being told she “couldn’t” — couldn’t go to college, couldn’t get a degree, couldn’t get published — to proving every one of those predictions wrong. Today, Michelle is a published author on platforms including The Mighty, Dyscalculia Blog, The Reluctant Spoonie, and the Non-Verbal Learning Project. Her photography has been featured in Word Gathering and Work Ready, and she now works as a paraeducator supporting students with disabilities.

We discuss:
• What dyscalculia really is
• Early school struggles and the emotional impact
• Accommodations that help
• Advocacy, resilience, and overcoming doubt
• Michelle’s creative work and her passion for helping others
• The importance of understanding invisible disabilities

This is an empowering, heartfelt conversation for anyone living with a learning disability, parenting a neurodivergent child, or wanting to better support the disability community.

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please include the Rare Connection Facebook Group and The Adaptive Kitchen my Facebook group for people with multiple diets.

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Absolutely — here is a polished Buzzsprout audio-only description that includes everything you requested: Michelle’s story, dyscalculia, Rare Connection FB Group, and The Adaptive Kitchen.

Title (optional if you want one): Living with Dyscalculia: Michelle’s Story of Resilience & Advocacy

Description:
In this episode of Rare Connection, Joanna sits down with Michelle Steiner, a writer, photographer, paraeducator, and disability advocate who has lived her entire life with an invisible disability — dyscalculia, a learning disability that affects math, numbers, and spatial reasoning.

Michelle shares how she was repeatedly told what she couldn’t do:
➤ She’d never go to college.
➤ She’d never earn a degree.
➤ She’d never build the career she wanted.
➤ She’d never become a published writer.

She proved every one of those predictions wrong.

Today, Michelle holds a bachelor’s degree in Community Programming for Americans with Disabilities from Slippery Rock University. Her writing has appeared in The Mighty, Non-Verbal Learning Project, D

Listen on: Apple Podcasts Spotify

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In this powerful episode of Rare Connection, Joanna Ball speaks with Saida Mahoney — a beauty queen, author of nine books, athlete, performing artist, and National Rare Disease and Disability Advocate living with Partial Trisomy 8q Duplication Syndrome, an ultra-rare genetic condition.

Saida shares her journey growing up with neurological challenges and multiple types of epilepsy, including focal, grand mal, idiopathic, and absence seizures. Her story is one of resilience, faith, and advocacy — showing the world that rare disease and disability don’t define a person’s worth or strength.

💜 Topics Discussed:

• Living with Partial Trisomy 8q Duplication Syndrome
• Navigating life with epilepsy and neurological symptoms
• The importance of epilepsy awareness in the rare disease and IDD communities
• Finding identity and purpose through advocacy
• Using creativity, education, and pageantry to empower others

📚 Saida Mahoney’s eBooks on Wattpad

Explore Saida’s inspiring writing and advocacy through her online books:

• Overcoming the Challenges: The Journey of Becoming Strongerhttps://www.wattpad.com/story/394759652-overcoming-the-challenges-the-journey-of-becoming?utm_source=ios&utm_medium=link&utm_content=share_writing&wp_page=create&wp_uname=wondergirlsaida

• The Blue and Gold Warrior Who Became Stronger and Wiser\https://www.wattpad.com/story/296241094-the-blue-and-gold-warrior-who-became-stronger-and?utm_source=ios&utm_medium=link&utm_content=share_writing&wp_page=create&wp_uname=wondergirlsaida
• The Golden Super Hero Who Fought The Battlehttps://www.wattpad.com/story/328033386-the-gold-superhero-who-fought-the-battles-won?utm_source=ios&utm_medium=link&utm_content=share_writing&wp_page=create&wp_uname=wondergirlsaida
• The Girl With Yhe Golden Braveheart Hearthttps://www.wattpad.com/story/323430217-the-girl-with-the-golden-braveheartutm_source=ios&utm_medium=link&utm_content=share_writing&wp_page=create&wp_uname=wondergirlsaida
• The Golden Brave Champion: Overcoming the https://www.wattpad.com/story/301998758-the-golden-brave-champion-overcoming-the?utm_source=ios&utm_medium=link&utm_content=share_writing&wp_page=create&wp_uname=wondergirlsaida
• The Superhero With The Blue Hearthttps://www.wattpad.com/story/307735090-the-superhero-with-the-blue-heart?utm_source=ios&utm_medium=link&utm_content=share_writing&wp_page=create&wp_uname=wondergirlsaidaThe Super Hero Dreamed And https://www.wattpad.com/story/277474638-the-super-hero-who-dreamed-and-persevere?utm_source=ios&utm_medium=link&utm_content=share_writing&wp_page=create&wp_uname=wondergirlsaida
• The Blue And Read

Listen on: Apple Podcasts Spotify

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