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

Pee Math: The Urinary Algebra of Disabled Life

How much planning can one bladder require? More than most people realize. In this episode, we unpack the surprisingly complex calculations that shape daily life when disability, caregiving schedules, transportation, and accessible infrastructure all intersect. From timing fluids around appointments and rides to evaluating the accessibility of public bathrooms, every outing can involve a series of equations that most nondisabled people never have to solve. We explore the hidden logistics behind something as basic as using the restroom—discussing dependence on caregivers, the emotional labor of coordinating personal care, the realities of being a disabled woman navigating public spaces, and the constant mental math required to balance independence, dignity, safety, and practicality. This episode shines a light on the everyday problem-solving that often goes unseen—revealing how disability transforms ordinary tasks into intricate calculations, and why accessible infrastructure is about far more than convenience. It’s a candid conversation about bodily realities, disability culture, resilience, and the strange mathematics of making it through the day one bathroom break at a time. Links Mentioned: Changing Spaces (Advocating for Accessible Restrooms with Universal Changing Tables): https://www.changingspacescampaign.com/ Changing Places (Find accessible toilets in the UK): https://www.changing-places.org/ Momentum Refresh (America’s first fully accessible, universally designed, mobile restroom): https://momentumrefresh.com/ 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 tan puffy sleeve top with a rose gold sparkly necklace 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 black short sleeve hoodie and is positioned in front of a blurred background that hints at a window.

Our 6/6 Moment: World Collagen VI Awareness Day

In this special World Collagen VI Awareness Day episode, we celebrate the global Collagen VI-related dystrophy (COL6-RD) community while exploring the power of visibility, storytelling, advocacy, and connection. Kelly and Avery share what June 6 means to them as individuals living with COL6-RD, discuss the importance of awareness days in the rare disease community, and reflect on how the growing World COL6 Day movement is bringing people together across the globe.  Most importantly, we’re passing the mic. This episode features seven incredible women from the COL6 community who share their lived experiences, challenges, accomplishments, hopes, and perspectives on what it means to navigate life with Collagen VI-related dystrophy. From the United States to Canada, the United Kingdom, Australia, and beyond, these powerful voices highlight the resilience, tenacity, and adaptability that exist throughout our community. This episode belongs to the community. These real stories from real people living with COL6, sharing their truths in their own words. Whether you’re part of the COL6 community, connected to the rare disease world, or simply interested in learning more, we hope this episode leaves you feeling informed, connected, and empowered. Because 6/6 isn’t just a day on the calendar. It’s our moment. Links Mentioned: * World COL6 Day: col6.world [https://col6.world/] * Register for the 2nd Annual World COL6 Day Virtual Event on 6/6/2026: col6.world/applicationform [https://col6.world/applicationform] * Create content to promote 6/6 Day: col6.world/downloadyourcontent [https://col6.world/downloadyourcontent] * Sign the petition to make World COL6 Awareness Day an official United Nations-recognized International Day: change.org/p/6th-of-june-the-world-collagen-6-myopathy-day-as-a-united-nations-day [https://www.change.org/p/6th-of-june-the-world-collagen-6-myopathy-day-as-a-united-nations-day] Connect with Adina Hermann Instagram [https://www.instagram.com/adina_hermann/] | LinkedIn [https://www.linkedin.com/in/adina-hermann-b496a6226/] | Adina's Children's Book [http://www.als-ela-das-all-eroberte.de] | SOZIALHELDEN (Social Heroes) [http://www.sozialhelden.de] Connect with Alessa Dumbrill Instagram [https://www.instagram.com/wheeliegood.adl?igsh=dnl3eXowYXJncnR2&utm_source=qr] | Website [https://pastelpowerchair.wordpress.com/food-access-reviews/?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAdGRleAQy4uxleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAaeKHKvW1n0xf5NXAsQhAsNGyh84I9Q1fy05MGKZEvp6obmK27w4H5LGlYkKqA_aem_FeeRlck7cg6Dmi6-cHHHTw] Connect with Brindisi Milton Instagram [https://www.instagram.com/_killer_b?igsh=MXZxZnZkbXlpMmtnMg==] | Website [https://killerbeestudio.myportfolio.com/] | Linktree [https://linktr.ee/_killerbeestudio_?utm_source=linktree_profile_share<sid=dc33318b-8049-44d4-9d28-8ba64032622d&fbclid=PAQ0xDSwLFtD1leHRuA2FlbQIxMQABpwbk2aCz532DxdIDlJ9ty_Q_E7FdtnQ5xUwK3E7tu8Ozx6cvHwwX8vNu19nU_aem_vwxQe7bWCHDHHrj9WuYv1Q] Connect with Caroline LeMay LinkedIn [https://www.linkedin.com/in/caroline-lemay/] Connect with Meghan Hines LinkedIn [https://www.linkedin.com/in/meghan-e-hines/] | PowerHockey Canada [https://www.powerhockeycanada.com/] Connect with Sarah Rose Instagram [https://www.instagram.com/rahrose78] | Facebook [https://www.facebook.com/share/1EViHpXizg/?mibextid=wwXIfr] | X/Twitter [https://x.com/evilgiraffe20] | Website [http://www.pathfindersalliance.org.uk] 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, Adina, Alessa, Brindisi, Caroline, Katie, Meghan, and Sarah engage in a virtual conversation. Kelly is a woman with light skin and light brown hair, wearing a tie-dye pattern in muted green and gray tones, multiple-layered necklaces, and white wireless AirPods. She is positioned in front of a wall with some decor. Avery is a woman with light brown hair. She is wearing a dark-colored 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. Adina has straight, light brown hair and wears a light gray sweatshirt, seated in front of a pale green wall decorated with framed artwork. Alessa has blonde hair with a purple tint, wearing glasses and a blue floral top. A mouthpiece ventilation is attached to her wheelchair. Brindisi has short, curly dark hair, clear-rimmed glasses, a lip piercing, and white earbuds, wearing a dark olive-green shirt. Her background includes a tapestry, shelves, and a wooden door. Caroline has long dark hair, wearing a dark green polka-dot top and a heart-shaped pendant necklace. She appears in front of a blurred indoor background. Katie has long, light brown hair and glasses, wearing a gray sweater. Behind her is a living space with a doorway leading to a room with a couch, along with shelving and a floor lamp. Meghan has long dark brown hair, is wearing a dark maroon top, and is holding a mouthpiece ventilation. She appears in a home with a cabinet and white paneled doors behind her. Sarah has short reddish-brown hair and wears a bright red top along with a BiPAP mask covering her nose. Her background features contrasting beige and blue walls.

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.