The TyePod

The TyePod is back this week with Frankie Perazzola (@shakey.frankie) who is a coach at The Blueprint LA (@theblueprintla) and has Friedreich ataxia (FA). I’m excited to share our conversation with you all because it’s filled with badassery-yes I said it 😊! I loved the discussion Frankie and I had in this episode! From feeling music to the core (aka frisson which is my new favorite word) to chara...

A special edition of “The TyePod” is coming in hot as TWO amazing guests are featured in this episode: Kelly Berger (@thekellyberger) who is an adaptive traveler and Avery Roberts who is an NYC dancer (@avery.nicole916)! Kelly and Avery both live with Congenital Muscular Dystrophy and are heavily involved in the muscular dystrophy and larger disability communities. It was so great to chat with the...

It’s your friendly neighborhood PhD again! This episode of “The TyePod” I have a conversation with Clara Ritger (@clararitger) who is a writer and Trauma-informed Meditation teacher! Our conversation delves into chronic illness and complications that often arise when doctors and, to be honest, ourselves doubt what our bodies are telling us. One of the highlight quotes from talking to Clara that st...

Hello there! In this episode I’m joined by Conor McAuley who is a digital creator and disability advocate (@conmcauley on Instagram)! Conor talks to me about his experience with Duchenne Muscular Dystrophy and his journey so far. It was great to chat with Conor and I totally recommend checking out his story on Instagram. He has some really insightful content including authentic written work! Be on...

Hello there! It was an honor to be joined by Sean Gold (@AuthorSeanGold) on this episode of The TyePod. He is an author, speaker and advocate in addition to host of the Crippled by Culture podcast, which I had the privilege of joining for a guest episode. Sean talks about his story living with Cerebral Palsy and a Tracheotomy with Breathing Tube. Thank you to his transcriber, Josh, whose voice can...

Hello there! In this episode I’m joined by Wendy Brown who is known by many as Auntie Spoonie (@ChronicallyHumored on Instagram and Threads)! We talk about her experiences with diagnosis and finding doctors who approach care in a more team based fashion. She also talks about how doctors and medical professionals do absolutely face burnout and high expectations, which I very much agree with especia...

Hello there! In this episode I’m joined by Malakai (@MalakaiStrong), PS Human Rights Commissioner! He talks about his experiences with Cerebral Palsy and intersectionality with being a Black trans man. We talk about challenges with caregiving, experiences with earning his degree, and finding support. We both have experienced similar situations in academia, with limited accommodations at times. We...

Hello there! Abbey Phillipson, Para Strength & Conditioning Coach for the University of Michigan (@AbbeyPhillipson) joins me on this episode of The TyePod! Abbey and I had an insightful conversation about her journey with Ehlers-Danlos syndrome (EDS). She also talks about becoming a coach and the diversity of athletes she works with! It was intriguing to get her thoughts on competition and the...

Hello there! It was an honor to be joined my Maisie Soetantyo (@MaisieSoetantyo) on this episode of The TyePod. Maisie talks about her experiences with AuDHD in addition to founding @GuidingExtraordinaryMinds and @AutismCareerPathways. She offers so many valuable resources for the entire extended autistic community! I highly recommend following her especially if you or someone you know is part of...

In this episode of The TyePod, I have a conversation with Joe Logue who is also known as Dystrophy Dad! He is a writer, poet, and a founder of the bad@ss group known as the Sons (and Daughters) of Dystrophy-@sonsofdystrophy. Joe works with Euan’s Guide as a Community Manager. We talk a bit about his life with Becker muscular dystrophy and his experience as a husband, father, employee, disability a...

In this episode of The TyePod, Cerys Davage, a 23-year-old podcast host from Cardiff, Wales, discusses her journey from studying drama to working in Welsh media. She and her sisters live with a progressive muscle condition, limb-girdle muscular dystrophy (LGMD).  Cerys hosts "Unbalanced," a podcast focusing on disability, health, and medicine, which has been running for over two years. S...

📣 Meet Maylan Chávez — disability advocate, psychology grad, and host of the  Access Granted  podcast. Born in Cuba and diagnosed with SMA type 2 at four months old, Maylan’s journey is one of resilience, advocacy, and empowerment. She opens up about the impact of Spinraza, how Eye Gaze technology has shaped her independence, and why building unity within the disability community matters now more...

In this episode of The TyePod, I talk with George Pollock (FSHD advocate and cyclist) about living with facioscapulohumeral muscular dystrophy (FSHD), challenging medical advice, and turning diagnosis into action. George shares how movement has become his resistance, why data and community are keys to progress, and how he’s helped raise awareness and funds through the Race Across America. 💪 His s...

Good day! This week’s episode of #TheTyePod features Nora Ramirez! Nora, an MDA ambassador, shares her journey with selenon related myopathy, a rare form of muscular dystrophy she was diagnosed with at age seven.  She discusses the challenges faced by her and her siblings, including misdiagnoses and medical trauma. Nora emphasizes the importance of advocacy through her involvement in various nonpr...

This week’s episode of #TheTyePod features Justin Moy who is a 3rd year PhD candidate at Boston University. Justin discusses his journey with #LAMA2 related muscular dystrophy and his research in bioinformatics, focusing on cell communication in muscle and heart diseases. Justin shares his experiences with travel accessibility, noting handicap accessibility and emphasizes the importance of interna...

This week’s episode of #TheTyePod features Sara Bastiaensen who lives with young onset Parkinson’s disease. I thoroughly enjoyed talking with Sara about her journey, parenthood with a progressive disease, and how important music is for managing disability (among other topics). Thank you to Sara for sharing her story with openness and honesty! You can follow her on Instagram @my_fight_against_pd. Y...

This week’s episode of #TheTyePod dives into the topic of disability and clothing adaptability with Olivia Ruston. She is a student studying #adaptivewear and heavily involved with textiles while also having firsthand experience as a #caregiver for her sister who has a #severedisability. While clothing options have improved, there are so many areas that are lacking including customizability and af...

It was great to have Steph McFarland (@mcstephiebee on Threads and Instagram) join me on The TyePod this week to talk about masculinity. She is an advocate and ally of healthy masculinity and researcher in the field. Our conversation touches on the evolution of the term and the idea that masculinity can take on alternative definitions based on the individual. Authentic masculinity is not based on...

This week Tye (@dr.tyedmartin) and Marilyn (@marilynbaileyphd) are joined by Andrew Gurza (@instagurza) who is a Digital creator, Disability Awareness Consultant, and is severely disabled. Our conversation with Andrew covers several topics that are often unmentioned or excluded when it comes to disabilities including severe disabilities like Cerebral Palsy, ableism within the disability and queer...

This week I am joined by Shamekka Marty aka @prettysicklupuschick on Instagram! We talk about her journey with lupus, advocacy and social media efforts, caregiving, and family. One of my favorite parts of the conversation was Shamekka sharing stories about creating adaptive tools for daily tasks like extended eating utensils! I thoroughly enjoyed our chat and hope listeners will as well!

This week I am joined by Ryan Swaynepoel who talks about his story with limb-girdle muscular dystrophy and how it has impacted his family life as a husband and father, his employment, and his hobbies including video games. The most important thing I learned from chatting with Ryan was his optimism (not the same as toxic positivity!) and his ability to reset and find ways to carry forward successfu...

Chelsea from Stress Dolls joins The TyePod for episode 10 to talk about her musical path including songwriting, forming a band, touring, radio hosting, and adapting to living Crohn's disease and gastroparesis. Chelsea shares her experience with healthcare and her support system that has helped her navigate the pivot points of life while continuing to pursue her passions. Our conversation touch...

Andy Bain joins me to cover all things #cooking, theme menus, and #culinary endeavors including a brief dive into #cremebrulee and #Ratatouille. As a person with #musculardystrophy, he talks about situations where #disabilities may require additional #spoons for activities like baking. We discuss the opportunities for more people with muscular dystrophy to enter the culinary world. Thank you to An...

In this episode of The TyePod I am joined by Adam Malone who is a travel agent in addition to the producer and host of the Handicapable Podcast. We dive into Adam’s journey and experience living with Duchenne Muscular Dystrophy. We also discuss adapting to challenges with activities such as bed transfers. You can learn more about Adam and the Handicapable Podcast on Instagram @thehandicapablepodca...

EJ Scott, an actor from Long Island, discussed his journey from New York to Los Angeles, his career in improv comedy, and his life with choroideremia, a degenerative eye disease. He shared his experiences with light sensitivity, which impacted his acting career, and his efforts in disability advocacy, including fundraising through marathons and comedy shows. EJ also talked about his wife, Deborah...