Making Our Way

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.

Patrick Gray and Justin Skeesuck have been friends since birth – born just hours apart in the same hospital, they have forged an incredible lifelong friendship based on adventure, laughter, and shared struggle.

We’re talking about all of it today – but we’re focusing on one particularly incredible journey – a pilgrimage – they undertook several years ago. Together, they climbed, trekked, and persevered through the 500 mile El Camino trail across northern Spain – but this wasn’t your run of the mill adventure – Patrick pushed and sometimes pulled and carried Justin in his wheelchair. And with the help – the community -- of others they met on the trail, they completed this incredible feat in 34 days.

Theirs is an incredible story of friendship, love and living every day – one minute at a time.

To learn more about Patrick and Justin's adventure and friendship, go to www.illpushyou.com.

To learn more about Team Joseph, go to www.teamjoseph.org.

Annaliese Williams is a university student and is one of the most extraordinary people I’ve ever had the honor of getting to know.

She has endured living with 2 rare diseases, an eating disorder and the cruelty of her peers. And although there is sadness and struggle in her story, hers is not a sad story.

Hers is the story of a young woman who is a powerhouse....a story of a young woman who made her way through unimaginable circumstances to come out on the other side as an advocate, a change-maker and an eloquent, gifted writer and speaker.

The words of others nearly destroyed Annaliese, but she believes that it was also the power of words – words from other people that were filled with compassion and love – that helped her heal.

She is determined to be an advocate and a voice for not only herself, but for other little girls who need someone in their corner.

This episode is a little different! Listener and former Making Our Way guest, Mandy Vogler, asked if she could interview Marissa. Why not!?! So, today Marissa is the guest, talking about her childhood, family, the day Joseph was diagnosed, navigating the unimaginable, and love and joy.

Thank you to Mandy for being curious and asking the questions.

For more information on Team Joseph, go to www.teamjoseph.org