Wheel Talk with Kelly and Avery Podcast

Collagen VI…Not the Skincare One: Woman Behind the Science

When most people hear the word “collagen,” they think skincare, beauty trends, or protein powders. But for the congenital muscular dystrophy (CMD) community, Collagen VI means something entirely different. In this episode, we were honored to be joined by the incredible Dr. A. Reghan Foley, Senior Research Physician in the Neuromuscular and Neurogenetic Disorders of Childhood Group at the National Institutes of Health (NIH), to unpack the science, lived experiences, and human stories behind Collagen VI-related dystrophies (COL6-RD), including Bethlem myopathy, intermediate, and Ullrich congenital muscular dystrophy. Dr. Foley has dedicated her career to advancing research and improving the quality of life for individuals living with COL6-RD. Together, we explore what Collagen VI actually does in the body, how genetic changes impact muscles, and why these conditions are so often misunderstood. We also dive into the emotional journey of diagnosis, the realities of living with COL6-RD, and the importance of research that truly listens to disabled voices. Episode Disclaimer This episode discusses medical conditions, research, and lived experiences related to Collagen VI-related dystrophies (COL6-RD). The content shared is for informational and educational purposes only and should not be considered medical advice, diagnosis, or treatment recommendations. Always consult your healthcare team regarding personal medical decisions or concerns. The thoughts and opinions expressed by the hosts and guest are their own and do not necessarily reflect the views of any affiliated organizations or institutions. Links Mentioned: * Merlin Bird App: merlin.allaboutbirds.org [https://merlin.allaboutbirds.org/] * Congenital Muscle Disease International Registry (CMDIR): cmdir.org [https://www.cmdir.org/] * Global Registry for COL6-related dystrophies: collagen6.org [https://collagen6.org/] * COL6 Alliance: musculardystrophyireland.weebly.com/collagen-vi-alliance.html [https://musculardystrophyireland.weebly.com/collagen-vi-alliance.html] * COL6 patient organizations to donate and support research:col6fund.org [https://www.col6fund.org/]fundacionnoelia.org/en/ [https://fundacionnoelia.org/en/]curecmd.org [https://www.curecmd.org/]musculardystrophyuk.org [https://www.musculardystrophyuk.org/]mda.org [https://www.mda.org/] * World COL6 Awareness Day held annually on June 6th: col6.world [https://col6.world/] Connect with Kelly Berger ⁠⁠Instagram [https://www.instagram.com/thekellyberger/]⁠⁠ | ⁠⁠Facebook [https://www.facebook.com/thekellyberger/]⁠⁠ | ⁠⁠LinkedIn [https://www.linkedin.com/in/thekellyberger/]⁠⁠ Connect with Avery Roberts ⁠⁠Instagram [https://www.instagram.com/avery.nicole916/]⁠⁠ | ⁠⁠Facebook [https://www.facebook.com/averyroberts916]⁠⁠ | ⁠⁠LinkedIn [https://www.linkedin.com/in/averyroberts916]⁠⁠ Intro/Outro Music Created by Andy Rusch Image Description: Avery, Kelly, and Dr. A. Reghan Foley engage in a virtual conversation. Dr. Foley, on the left, is a woman with light skin, has brown hair tied up, and is wearing a blue shirt. Behind her, an office space is visible. Kelly, in the middle, is a woman with light skin and light brown hair. She is wearing a pink collared shirt, a nose ring, and white earbuds, and is positioned in front of a wall, out of focus, with some decor. Avery, on the right, is a woman with light skin and brown, wavy hair. She is wearing a light grey top and white earbuds. A microphone is positioned in front of her, and the background is blurred, with what appears to be a window behind her.

Now Scanning: Price Check On Access in the Workplace

From barcode scanners and snack aisles to awkward customer moments, this episode takes you behind the self-checkout counter with Caden Sanchez, a wheelchair user balancing work, college, and everyday life. We chat about what it’s really like working in grocery retail, navigating accessibility on the job, dealing with customer assumptions, and finding independence along the way. Plus, we dive into Milwaukee favorites, weird self-checkout stories, favorite break snacks, and what accessibility should actually look like in everyday spaces. Grab your reusable bags and join us for a fun and thoughtful conversation. Links Mentioned: * U.S. State Vocational Rehabilitation Agencies: https://rsa.ed.gov/about/states [https://rsa.ed.gov/about/states] Connect with Kelly Berger ⁠⁠Instagram⁠⁠ [https://www.instagram.com/thekellyberger/] | ⁠⁠Facebook⁠⁠ [https://www.facebook.com/thekellyberger/] | ⁠⁠LinkedIn⁠⁠ [https://www.linkedin.com/in/thekellyberger/] Connect with Avery Roberts ⁠⁠Instagram⁠⁠ [https://www.instagram.com/avery.nicole916/] | ⁠⁠Facebook⁠⁠ [https://www.facebook.com/averyroberts916] | ⁠⁠LinkedIn⁠⁠ [https://www.linkedin.com/in/averyroberts916] Intro/Outro Music Created by Andy Rusch Image Description: Avery, Kelly, and Caden engage in a virtual conversation. Kelly, on the left, is a woman with light skin and light brown hair. She is wearing a burgundy top, a nose ring, and white earbuds, and is positioned in front of a wall, out of focus, with some decor. Avery, in the middle, is a woman with light brown, wavy hair. She is wearing a black top and white earbuds. A microphone is positioned in front of her, and the background is blurred, with what appears to be a window behind her. Caden, on the right, has short brown hair and is wearing a green hoodie and a black headset. Behind him, green walls are visible.

Draft One: Claiming the Pen by Writing Our Disabled Stories

In this episode, we sit down with William Griffin, who works in clinical research and is an aspiring writer in his free time. William brings a powerful perspective on what it means to grow up with a story already being written about you and the process of learning to write it for yourself instead. We explore the idea of “claiming the pen,” shifting from being described, studied, or interpreted to becoming the author of your own disabled narrative. We talk about the messy reality of storytelling: the pressure to be “inspirational,” the fear of being “took much” or “not enough,” and the challenge of knowing where a story even begins. This episode is a reminder that our stories don’t have to arrive fully formed. They just have to be ours. Links Mentioned: * Alice Wong: npr.org/2025/11/15/nx-s1-5609903/disability-rights-activist-author-alice-wong-dies-51 [https://www.npr.org/2025/11/15/nx-s1-5609903/disability-rights-activist-author-alice-wong-dies-51] * Saou Ichikawa: goodreads.com/author/show/50595830.Saou_Ichikawa [https://www.goodreads.com/author/show/50595830.Saou_Ichikawa] * JetPens: ⁠ [http://canine.org]jetpens.com [https://www.jetpens.com/] * One Story: ⁠ [http://guidingeyes.org]one-story.com [https://one-story.com/] * Zoetrope: All-Story: all-story.com [https://www.all-story.com/] Connect with William Griffin Instagram [https://www.instagram.com/william.not.bill] | X [https://x.com/WilliamNotBill] | LinkedIn [https://www.linkedin.com/in/william-griffin-42328281/] Connect with Kelly Berger ⁠Instagram⁠ [https://www.instagram.com/thekellyberger/] | ⁠Facebook⁠ [https://www.facebook.com/thekellyberger/] | ⁠LinkedIn⁠ [https://www.linkedin.com/in/thekellyberger/] Connect with Avery Roberts ⁠Instagram⁠ [https://www.instagram.com/avery.nicole916/] | ⁠Facebook⁠ [https://www.facebook.com/averyroberts916] | ⁠LinkedIn⁠ [https://www.linkedin.com/in/averyroberts916] Intro/Outro Music Created by Andy Rusch Image Description: Avery, Kelly, and William engage in a virtual conversation. Kelly, on the top right, is a woman with light skin and light brown hair. She is wearing an off-white sweater with silver embellishments, a nose ring, and white earbuds, and is positioned in front of a wall, out of focus, with some decor. Avery, on the bottom, is a woman with light brown, wavy hair. She is wearing a dark grey top and white earbuds. A microphone is positioned in front of her, and the background is blurred, with what appears to be a window behind her. William, on the top left, has short brown hair and is wearing a blue shirt and a black headset. Behind him, yellow walls and a window with white curtains are visible.

Big Screen, Bigger Impact: ReelAbilities Creates Disability Stories That Stick

Who gets to tell the stories we see on screen, and what changes when those voices finally shift? In this episode, we sit down with Isaac Zablocki, Co-Founder and CEO of the ReelAbilities Film Festival, the largest disability festival in the world. Avery also brings a unique behind-the-scenes perspective as a co-chair of this year’s opening night, sharing what it means to help shape an event centered on authentic representation. Isaac breaks down the origins and mission of ReelAbilities, its growth across cities worldwide, and why prioritizing disabled creatives and filmmakers is essential to driving lasting change in the industry. We highlight standout films and storytelling styles that leave a lasting impact, and Isaac shares what makes these stories resonate far beyond a single screening. This episode isn’t just about one event - it’s about a broader movement toward authentic representation and the growing demand for stories told by disabled voices, year-round. It’s also about reframing disability - not as a limitation, but as a vital perspective that deserves to be seen, heard, and valued. Links Mentioned: * ReelAbilities: reelabilities.org [https://reelabilities.org/] * ReelAbilities Film Festival: reelabilities.org/newyork/ong2026?utm_source=advisory&utm_medium=email&utm_campaign=ong2026&utm_content=Avery_Roberts [https://reelabilities.org/newyork/ong2026?utm_source=advisory&utm_medium=email&utm_campaign=ong2026&utm_content=Avery_Roberts] * ReelAbilities Industry Summit: reelabilities.org/summit [https://reelabilities.org/summit] * ReelAbilities Stream: reelabilities.org/stream [https://reelabilities.org/stream] * Reel Education: reelabilities.org/reeleducation [https://reelabilities.org/reeleducation] * ReelAbilities in the Workplace: reelabilities.org/workplace [https://reelabilities.org/workplace] Connect with Isaac Zablocki Facebook [https://www.facebook.com/Isaacjcc] | LinkedIn [https://www.linkedin.com/in/isaac-zablocki-3a534a2/] Connect with Kelly Berger ⁠Instagram⁠ [https://www.instagram.com/thekellyberger/] | ⁠Facebook⁠ [https://www.facebook.com/thekellyberger/] | ⁠LinkedIn⁠ [https://www.linkedin.com/in/thekellyberger/] Connect with Avery Roberts ⁠Instagram⁠ [https://www.instagram.com/avery.nicole916/] | ⁠Facebook⁠ [https://www.facebook.com/averyroberts916] | ⁠LinkedIn⁠ [https://www.linkedin.com/in/averyroberts916] Intro/Outro Music Created by Andy Rusch Image Description: Avery, Kelly, and Isaac engage in a virtual conversation. Kelly, on the left, is a woman with light skin and light brown hair. She is wearing a white sweater with a pink collar, a nose ring, and white earbuds, and is positioned in front of a wall, out of focus, with some decor. Avery, on the right, is a woman with light brown, wavy hair. She is wearing a light grey top and white earbuds. A microphone is positioned in front of her, and the background is blurred, with what appears to be a window behind her. Isaac, in the middle, has short hair and is wearing a grey sweater. Behind him is a wall, out of focus.

Would You Rather: Disability Edition

We are turning a classic party game into something hilariously relatable with a Disability Edition of “Would You Rather!” From absurd wheelchair upgrades to meaningful conversations about accessibility and independence, no topic is off-limits. Why do some of these “would you rather” questions feel a little too real? Whether you’re here to laugh, learn, or rethink your perspective, this episode brings humor, honesty, and a whole lot of personality. Play along if you dare…and ask yourself: what would YOU rather? Play free versions of Would You Rather online: * https://wouldyourather.app/s/w6s57 [https://wouldyourather.app/s/w6s57] * https://wouldurather.io/ [https://wouldurather.io/] * https://www.friendshipcircle.org/blog/2016/11/15/would-you-rather-special-needs-edition [https://www.friendshipcircle.org/blog/2016/11/15/would-you-rather-special-needs-edition] Connect with Kelly Berger ⁠Instagram⁠ [https://www.instagram.com/thekellyberger/] | ⁠Facebook⁠ [https://www.facebook.com/thekellyberger/] | ⁠LinkedIn⁠ [https://www.linkedin.com/in/thekellyberger/] Connect with Avery Roberts ⁠Instagram⁠ [https://www.instagram.com/avery.nicole916/] | ⁠Facebook⁠ [https://www.facebook.com/averyroberts916] | ⁠LinkedIn⁠ [https://www.linkedin.com/in/averyroberts916] Intro/Outro Music Created by Andy Rusch Image Description: Avery and Kelly engage in a virtual conversation. Kelly, on the left, is a woman with light skin, brown hair, a nose ring, and white earbuds. She is wearing a denim top and is positioned in front of a wall, out of focus, with some decor. Avery, on the right, is another woman with light skin, brown hair, and white earbuds. She is wearing a navy blue top and is positioned in front of a blurred background that hints at a window.