Making Our Way

Today we’re joined by not just one guest, but SIX special people who not only joined us for this podcast, but who generously gave their time over the past 7 months to create something really special.

Each one of these guys is passionate about helping and empowering people with Duchenne muscular dystrophy to find meaning, purpose, and be aware of all the possibilities in life that they can explore.

They’re working with our Team Joseph staff to plan out the first conference exclusively for older adolescents with Duchenne. They’re taking time away from their work, spending time with their friends and family, from school, and from their individual goals to make sure we create something powerful for others living with Duchenne.

And they know a lot about this because they all have Duchenne themselves. It’s been incredible to see and share in their enthusiasm, dedication, and passion as this conference has come together – whether you have a connection to Duchenne (or not!) this conversation is a beautiful example of purpose, generosity, selflessness and the building of community.

Welcome to this very special episode featuring the Planning Committee behind our conference titled “What Now? Possibilities in Adulthood with Duchenne” -- a conference FOR people with Duchenne, planned BY people with Duchenne.

This is one of the most heartfelt and earnest conversations we’ve ever had. You can literally FEEL the spirit and heart of this group! Let’s get started.

Meet Darrel Nicklow, a 25 year old entrepreneur from Florida who has done more, seen more and been through more than most of us do in a lifetime. He was diagnosed with Duchenne muscular dystrophy before he turned 5 years old. At the end of seventh grade, Darrel’s heart began to fail and he was in the hospital for 400 days while he waited for a heart and recovered after the transplant. Now, he has come out on the other side as a young man with humility and a fierce desire to leave his mark. He is an incredible example of determination and hope.

Darrel graduated high school in 2016 and attended college to earn a degree in media design. In the meantime, he began the company Limitless Designs. He now does freelance graphic design work and loves making beautiful images for his clients. Initially, he wanted to be a chef, but had to pivot career paths because his muscles couldn’t keep up with the physically demanding work.

In our podcast episode, Darrel shares his journey from an athletic early childhood to being diagnosed with Duchenne muscular dystrophy, pivoting career paths, what his recovery process was like after his heart transplant and what his dream life looks like.

Tune in to hear about Darrel’s inspiring story of resilience, optimism and gratitude. Hear about his Youtube channel, which showcases his community’s underrepresented sports teams, talent and people.

After losing her home, her marriage, and her financial security, Molly had to start over in her 40’s. After beginning to rebuild her life – a new husband, a new job..... she was diagnosed with breast cancer.

While still struggling to make ends meet, in line at the food bank to feed her 5 children, Molly decided to address the need for families to have financial support while going through treatment....through that, the Pink Fund was born.

She shares how she went from a life of incredible privilege to one of struggling to get by....from “riches to rags” as she says, and ultimately to a life of purpose and connection.

Molly is the epitome of determination and heart. Her story is one of overcoming, and ultimately it’s a profound example of the power of community.

In our last episode, Nate Plasman shared his story about his little boy’s diagnosis with a rare disease and the battle to get him into a clinical trial. Today, we’re looking at what can happen once that drug is approved by the FDA and doctors can begin to prescribe it.

I’m talking to 2 families who live on opposite sides of the country, but were brought together in the fight of their lives. For so many of us facing the unimaginable – a loved one battling an illness or disease for which there is no cure – it seems that an approved treatment could be the answer. But oftentimes, that approval is the beginning of another heart-wrenching fight. The fight for access to that treatment.

Our story today focuses on the June 2023 FDA approval of Elevidys – the first approved gene therapy for 4 and 5 year olds with Duchenne muscular dystrophy. Heather Hay, and Phil and Jena Huber share their families’ experiences, their deep commitment to helping other children get access to a treatment, and their fierce belief that a community can drive change.

This is the individual and unique experience of these 2 families and our focus is not so much on the treatment itself as it is on what families go through and how love can move mountains.

We’re going to kick off the New Year with this really special episode. If you need a dose of hope and encouragement – you are in the right place!

I’m talking with Nate Plasman. Nate and his wife are parents to 3 kids and when their youngest, Andrew, was still a baby they started to notice that something wasn’t right.

When Andrew was diagnosed with Duchenne muscular dystrophy, amidst the devastation and fear, Nate became a fierce advocate for his son and moved mountains to get him into a clinical trial.

He was instrumental in changing the course of his own son’s life, and now he’s determined to do the same for other kids.

I do want to say that this is one father’s – and one child’s – story. This is about their unique experience in a clinical trial, and one particular company’s treatment that is the first approved gene therapy for Duchenne. Every experience is personal and there are and will be so many stories to tell – I hope that today you enjoy hearing about this sweet family. This is a special story of fear, of faith and doubt, of dreams, and miracles.

Today I’m talking with Dr. Natalie Truba. Dr. Truba is a pediatric psychologist at Nationwide Children’s Hospital in Columbus, Ohio.

I wanted to talk to Natalie about the challenges of living BEYOND a diagnosis or illness....how do we deal with that intense medical part of our lives or the life of a loved one, while still really living and not being consumed by a medical condition.

We’re talking about the bravery it takes to acknowledge struggle, to look at mental and emotional health and how it’s woven into a physical diagnosis, and how to plan for a future for our kids with medical conditions (hint...they should be a part of it!).

And we’re also talking about how valuable hardships and failures are, and Natalie talks about the beauty of having dreams – not necessarily attaining them – but just pursuing them.

I’m telling you – she is a pediatric psychologist, but her work, her words, and her heart for helping families have the best quality of life is relevant to everyone – parents, loved ones and patients alike.

Today's conversation is with an amazing writer and a fierce advocate, Kate Washington.

In Kate’s professional life, she is a food writer in Sacramento. Recently, she wrote her first book, titled “Already Toast” – it may seem like a nod to her writing career focused on food, but it’s actually a reference to a world she was thrust into – the world of unexpectedly and suddenly becoming a caregiver.

When Kate’s then husband was diagnosed with an aggressive form of cancer, they had 2 young kids and busy careers, and Kate added full-time caregiver to her responsibilities.

She’s taking us inside the expectations, the demands and the heartache of caregiving in America. Through her deeply personal story, she’s shining a light onto the unrealistic expectations put on families – whether caring for an adult or child in the household.

She talks about the isolation, the lack of training – she was given a handout (!!) and 20 minutes of training to learn how to be a full-time caregiver which included administering 35 medications a day, some of which were inserted into an IV.

One in 6 people in our country are caregivers, and the average number of hours per week are 20. This is actually now being looked at as a public health issue and for good reason. If we’re not already, most of us will be caregivers for a loved one at some point. Kate’s experience is relevant and it’s riveting. It’s a story of bravery, dedication and grit.

Lauren Fritz is mom to 2 boys with Duchenne muscular dystrophy, and she’s a therapist in private practice.

She worked for years as a trauma and grief counselor, helping families deal with heartache, loss and catastrophic medical issues.

But today, she’s talking about her deeply personal story of being a caregiver to her 2 sons for the past 15 years, and she’s sharing how she’s navigated her own initial reaction to becoming a caregiver and how their lives have evolved as her sons’ disease progressed.

Lauren has a beautiful perspective on what she calls the spirituality of caregiving, and moving from a place of repulsion and fear about what lay ahead to a place where she can tend to her own needs and savoring moments every day.

Through giving us an intimate look into her own life – both the joys and the struggles -- she shares so much comfort. And most important, I think she helps all of us feel like, no matter what we’re making our way through right now, or who we’re giving some extra care to, we will find our way through uncharted territory.

Crystal Gerhardt is a mom of 2 boys, one who was diagnosed with autism and then a short time later with Duchenne muscular dystrophy. She’s also a psychiatric mental health nurse practitioner who spends her professional days tending to the emotional needs of others.

So, we’re talking today about grief and joy and friendship. Crystal has a special perspective that’s framed by grace and a spirit of fun, as well as her own evolution and growth into the person she is today.

She has so much to offer – whether you have a child with a challenging diagnosis or you’ve ever received any kind of news that was tough to navigate.

We’re talking today about friendship. But not just any friendship. Molly Barry and Leslie Ridgeway give us an inside look at their sweet, loyal, fierce friendship and you’re going to love them. They are irreverent and funny and driven by a commitment to care for each other and be there in the trenches no matter what. Their relationship started in tragedy and evolved into a sisterhood of loyalty, laughter and the deepest love.