Like Mother, Like Son With Victor & Lori McConnell

Flying High With Soar

What if the only thing standing between you and a life-saving treatment was a price tag? For many living with Spinal Muscular Atrophy, that’s the reality—Spinraza, one of three FDA approved treatments for SMA costs about $425,000 per injection. Beyond the medical challenges, families face crushing financial barriers and questions of accessibility that differ drastically from country to country. This week, we hear from brothers Derek and Justin. Justin lives with SMA type 1, and Derek—his brother and caregiver—has transformed their experience into a mission. He founded SOAR, a nonprofit dedicated to supporting the SMA community by providing community outreach and support. Under SOAR, Derek created the SMA Support Mates Program, which connects kids and young adults with older mentors who know exactly what it’s like to live with SMA.  Together, we talk about the urgent fight for affordable treatments, the stark contrast in accessibility between the U.S. and Vietnam, and how community can light the path forward.

Like Mother, Like Son With Victor & Lori McConnell

On the latest episode of The Disability Myth, our friend Victor McConnell returns, but this time, he’s brought someone very special: his mom, Lori! He was born missing an arm. She lost part of her hand in a childhood accident. Together, they talk about growing up with physical differences in different eras, parenting with disability, and how physical differences have impacted their lives as a whole. Plus, we get more 1 on 1 time with Victor to talk about the ongoing battle of pain-management and how we deal with the mental health struggles that come with it. Another great conversation that you don’t wanna miss!

The Autism Voyage: A Deep Dive

According to the World Health Organization, 1 in 100 children worldwide live with autism. In this episode, we sit down with the founder of The Autism Voyage, a blog, resource home, and consulting service dedicated to helping families affected by autism navigate the often overwhelming world of finances and insurance. We talk about the real-life challenges families face, the gaps in the system, and how The Autism Voyage empowers parents with the tools, knowledge, and confidence to plan for the future. Plus, we get to hear how Michael Pereira navigated his son Christian’s diagnosis and the advice he has for others in similar circumstances. Whether you're a caregiver, advocate, or just curious, this conversation is filled with insight, compassion, and practical advice.

High Schooler Q&A Part 2

What’s your favorite restaurant? Who’s your favorite 49ers player? What's one thing you would change about your life and why? These are just a few of the hard-hitting questions that we answer in this final segment of our high school Q&A. Get comfy and join us as we talk football, retrospection, food, and movies!

High Schooler Q&A Part 1

If you live with a visible disability, there’s no doubt that at one point in your life, you’ve been asked by a child, “what’s wrong with you,” or “why can’t you walk”. These types of questions can be hard to answer but being patient enough to answer people’s curiosities can lead to common understanding. On this week’s episode, we answer questions from high school freshman. I recently had the great privilege of being able to speak to the high school that we graduated from about my life. About a week after my presentations, I received a folder full of letters and follow up questions from the students. So join us as we let the students run the show—covering everything from our favorite movies and go-to comfort foods to what really motivates us when things get tough. Second half coming next week!