Making Our Way

In this powerful and deeply personal episode of Making Our Way, we sit down with Vivian, a single mother caring for her son who is living with Duchenne muscular dystrophy. She opens up about the emotional aspect of caregiving—the quiet moments of exhaustion, the light moments of joy, and how she digs deep to draw on strength—even when she doesn't have much left to give. This conversation isn't just about Duchenne. It's about love and a tender connection between a mom and her son. It's about every parent who's ever felt overwhelmed. Every caregiver who's ever hidden their pain. And every person who's ever had to keep it all together, even when they're falling apart.

Who's up for an exhale? We have a little gift for you at the end of the year - in this mini episode, we're reflecting on the gentle guidance and wisdom from past guests - beautiful reminders of the uniqueness of our journeys, and the profound impact of allowing the hard stuff in life to sit right there alongside adventure, love, and joy. Sometimes hope is simply the belief in possibilities—and there is always the possibility for new beginnings. As we head out of the holiday bustle and into the freshness of a new year, we hope you can take a few minutes to pause and reflect. Enjoy!

We are coming to you today with a special update from one of our most popular guests. We've talked to Tonya Dreher before and she is one of the most adventurous and genuine people that I know. If you haven't heard her before, I encourage you to listen to her other episodes after you listen to this one - you don't need to listen to them in order. I promise you it'll be worth your time! We recorded this episode with Tonya a few months ago when she was back in Nepal focusing on her work in the muscular dystrophy community. She is heading back to Nepal again soon -- working diligently to bring care to children who go without even the basics. We are so so lucky to witness her creativity and her determination. She is literally changing the world one family at a time.

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.

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

Larry Luxner is a journalist who's covered international affairs, politics and business for over 40 years. More recently, he began writing about rare diseases. He's fiercely committed to shining a light onto important topics and stories. So, today's episode is just a little bit different.....we're going behind the mic and behind the pen so to speak -- we're focusing not only on Larry's personal story, but on the unique perspective and insights he's gained from sharing the stories of so many other people. When I think about my journey with Duchenne muscular dystrophy – I know that I didn't choose it. I didn't have a choice but to be immersed in this rare disease – a diagnosis was handed to my youngest son and we just started moving forward, and Duchenne was woven into our lives. So, what always fascinates me are the people who CHOOSE to be in this space with us. Who commit to helping and telling our stories in order to impact our world in a positive way. Larry is one of those people. He's traveled the world, interviewing dignitaries and luminaries, and brilliant minds – but he's still humble and curious. Today, we talk about hope, perspective, and the very human side of telling our stories. Read Larry's coverage of rare disease at https://www.rarediseaseadvisor.com/author/larry-luxner

I can confidently say that Elijah Stacy is one of the most fascinating people I've met. He is the author of “A Small If”, and he speaks regularly about his philosophy on life and the struggles that have inspired it. He has the wisdom and approach to life that you might expect from someone in their 70's or 80's but Elijah is only 20 years old. He is on a mission to change the world – to cure diseases, to reduce humanity's suffering, and to inspire other people to overcome. It's the huge struggles he's faced, and the suffering he's witnessed in his own family, that has influenced him to develop an amazing mindset of tenacity and ambition.

Jake Marrazzo is a short film creator, entrepreneur, and published author who's working on his second book. His accomplishments would be impressive for anyone, but he's just barely out of high school. Currently a 19-year old college student, he's our youngest guest ever, AND I'd have to say ...one of our wisest. Jake is impressive by any measure, but his enthusiasm for life is so special because of the struggles he's navigated. I should say – because of the struggles he IS navigating...every single day. Jake has more to deal with than most of his peers, but his story is not about what he's done with his struggles – it's really, to him, about what he is doing with his life. To learn more about Jake Marrazzo and to order his book, please visit: https://jakemarrazzo.com/about/ To learn more about Team Joseph, please visit: www.teamjoseph.org

Today I'm talking with my friend, Tonya Dreher – her name might sound familiar to you. I talked with Tonya last year – one of our first episodes. We talked about her battle with breast cancer, her son Gus' devastating diagnosis of Duchenne muscular dystrophy, and her quest to raise funds to help find a cure for Duchenne by climbing to basecamp of Mt Everest. Today, I'm talking to her on the EVE of her departure to Nepal for another trek up Everest – this is the first time that she and her team are heading back in 2 years. And today, she's sharing with us more about the people of Nepal – in particular her dear friend, Nirmal who, along with his wife, opens his home to boys with Duchenne in their remote village. Theirs is a beautiful story of courage, love and selflessness – and we need more of that in the world. To support Tonya's trek to basecamp of Mt. Everest, go to www.everesttoendduchenne.org. To learn more about Team Joseph, go to www.teamjoseph.org

Laura McLinn is one of the kindest, gentlest people I know – and she is also one of the fiercest advocates for what she believes in. She is quite literally a world changer. Her story is especially important in this month of February since February is Rare disease month. Some people may not think that this affects them, because rare disease is rare – it's someone else's journey. But “rare” is not actually that rare. There are 25 - 30 million Americans with a rare disease – that's one person on every elevator you get into. Imagine how many people that is when you walk into a grocery store. So...... I venture to guess that everyone knows someone for whom this month of advocacy is critical and important. Advocacy is really just telling our stories and building relationships. Advocating and storytelling can happen on a large scale – at a national level, or on a smaller scale – in our schools or neighborhoods or with our doctors and healthcare providers. And just like everyone probably knows someone with a rare disease, everyone can be an advocate for change. Whether it's a disease or health issue or anything else that you believe in and feel strongly about, telling our stories and advocating for change is for all of us. Laura went from a mom who had never been in her state house, to wrestling with a devastating diagnosis for her little boy and becoming a thought-leader and advocating on a national level and building relationships throughout 2 administrations, in some of the most powerful offices in Washington. She talks about how personal advocacy is – how she followed her heart even among opposition and some controversy. She focuses on unity, welcoming differing viewpoints, and selflessly advocating even when it doesn't benefit her own son. Laura is a breath of fresh air in our politically charged climate – she leads with hope and love and finding a path forward that unites rather than divides.

Today, I'm talking with a beautiful soul.....my friend, Hulda, from Iceland. There's an old quote that's been floating around for a long time, and it says something like “dance like no one is watching” – well....that's exactly what Hulda does....except a LOT of people are watching. In the face of heartache, Hulda decided to approach her life with love and by making other people smile and laugh. Her son has Duchenne muscular dystrophy, like my youngest son Joseph – after his diagnosis Hulda decided to – as she says – turn her pain into power. And her “Dancing for Duchenne” was born. On Fridays, she puts out a new video – she and her son dance in their kitchen, they dance at fire stations, through the power of technology they dance with people around the world, they dance with musicians, and they've even danced with the Prime Minister of Iceland. Hulda talks about how her ADHD is her super power because it fuels her creativity and she talks about her fierce commitment to being better, not bitter, even in the face of big struggles. She is so genuine and heartfelt and just a breath of fresh air. We need more of her in this world! To see Hulda and her son “Dancing For Duchenne”: https://www.facebook.com/groups/440675286380242/ Message Hulda if you'd like to dance with her! For more information on Team Joseph: www.teamjoseph.org

Today, I'm talking with Dr. Tom McNalley. THIS is a tough one. But it's so beautiful, and I think it's one we all need to hear, maybe more now than ever. Tom and I talk today about difficult diagnosis', living with illness and disease, and how to listen and love each other through it. Tom is a pediatric palliative care doctor, and I had so many questions for him. Like what is palliative care? Does it mean someone is dying anytime soon? (no, no it doesn't) Is it the same as hospice care? (no, no it's not) And how can we all take care of each other, and really listen to what our loved ones need and want. It's hard to talk about disease and the journeys we are on without acknowledging and talking about death. We talk about things like “we're all dying” and the question of “why are we afraid of death?” This conversation was uncomfortable for me at so many moments – these are tough, raw topics. But it was also peaceful and hopeful. Tom has a way of making it so. Please don't be afraid of this conversation. Listen and share and maybe listen again. Because at the end of the day, we can't always avoid illness and disease and even death. But with people like Dr. Tom McNalley by our side, we can face the tough stuff with a focus on how we live in whatever time we have. And isn't that the way it should be? Wouldn't that be beautiful if that's how we all approached life? Every single day? Illness or not? Disease or no disease. Tom shares how we can also focus on caring for each other. After spending this time with him, it left me wondering and feeling pretty sure that the greatest medicines we have are compassion and love.

This is a short but special episode created by our listeners! They share their heart and voices, and it is powerful. Here we are at the end of one year (our first year of our Making Our Way podcast!) and the start of a new one. Thank you to every one of you for listening and subscribing and believing in the power of our stories. As you may have heard in our conversations on different episodes, many of us have faced challenges – some that may seem insurmountable – whether it's caring for a loved one with a degenerative disease or facing grief and loss or the opportunity to overcome – whatever those challenges have looked like, so many of our guests have found joy mixed with the sorrow. And even when the road is painstakingly hard, there are often unexpected gifts along the way. So...as we close out the season of giving, we wanted to give our listeners a chance to share. We asked them....whats the best gift you've ever received? And/or what's the best gift you've ever given? Their responses are insightful and poignant and heartfelt.

Jill Castle is an advocate, an adventurer, and an outspoken proponent of making a life for yourself EVEN when you're a parent and have a lot of heavy responsibilities. She has evolved from a mom who did everything for her son with Duchenne muscular dystrophy to a mom who is ok letting go and has stopped apologizing for wanting her own life. She went from neglecting her own needs, doing things on a grand scale and with expectations of perfection, to carving out a life for herself. She is fascinating and unapologetic in her growth and acknowledgement of her own role in her exhaustion and struggles. She lays it all out here – doing the tough personal work, getting sober, leading with humility and honesty, and approaching happiness and joy as if they are emergencies. She's full of life and compassion and truth, and she makes us really think.

Chris Jones has influenced and touched hundreds of thousands of people around the world because of the way in which he shared his son Mitchell's journey with a catastrophic disease that took his life. Duchenne attacked Mitchell's heart earlier in his young life than was predicted. Chris created a FB page to share updates with his family and friends. But soon, the following grew. And as Chris and his family navigated the unimaginable – Mitch's final months and days – Chris shared his little boy's story – the spirit and the heart of Mitch – with the world. He let us all in – to the heartache, the joy and the beauty, and the grief. Chris and his family gained support and love from the world, while changing it for the better through selflessly sharing intimate moments from their own love-filled journey. We talk about all of it today – the diagnosis, the shock, grief and joy and despair, and finding meaning in all of it. There is sadness and brokenness in Chris' story, but his is not a sad story. It is one of courage and compassion, seeing the good, and loving each other through the toughest times.

Here we go with Season 2! We are so incredibly lucky to be talking with Adam Hill....Adam is a father, husband, doctor, and a fierce advocate for mental health and a more compassionate world. He's the director of palliative care at Riley Children's Hospital in Indianapolis. While he helps families in the most tender and difficult circumstances, he is continuing on his own journey of recovery. Adam is amazingly open about his battles with anxiety, depression and alcoholism, as well as the times in his life when he had an active suicide plan. He was an accomplished high school and college athlete, and he made his way through medical school – all while crumbling under the weight of struggles. Adam shares his heart with us and how he found his way to his calling as a pediatric palliative care doctor. He is on his own journey with health and peace, while he helps his patients and their families with the same. I stumbled on a tweet of his several years ago and loved his compassion and the way he advocated for himself and the ways that we can take care of each other. I'm so glad he said yes when I asked him to be here on Making Our Way. What a gift to spend this time with him. Follow Adam on Twitter - @Adamhill1212 Find his book on Amazon - Long Walk Out of the Woods Follow Team Joseph on Twitter @TeamJosephInfo, Facebook:@teamjosephinfo, Instagram: team_joseph or visit us at www.teamjoseph.org Please subscribe, share and review us wherever you listen to podcasts!

On this episode, we're wrapping up Season 1 with some reflections and a short clip from each episode. These amazing conversations are the perfect backdrop to some really happy news I'm sharing. It's something I wasn't sure would ever happen. But here we are, and there's been a lot of celebrating going on in my house. Enjoy!

Rob Dube is a business leader who started his entrepreneurial career by selling Blow Pops out of his high school locker with his best friend. After college, he went on to start a company that was named in 2017 as one of Forbes Top 25 Small Giants – a honor given to the best small companies in America. By all accounts, he was successful, but Rob had struggled with stress and anxiety. He made his way through that with self-awareness, a lot of hard work, and ultimately....meditation. Over the years, Rob met many other top level leaders in business, sports and the military who also meditated, and he eventually wrote a book called “Do Nothing” – a fascinating read that explores the benefits and the power of mindfulness meditation for all of us – whether we're leading a company or a family or just want more peace in our lives. Rob and I talk about stressors, about perspective, about embracing joyful times AND difficult times, and the tangible impact of meditation beyond the actual time spent meditating. Rob says that meditation is the gateway into showing up as a better person in our all around life. It's free, you can't do it wrong, and he even leads us through a short meditation session in this episode. Rob is wise, he's kind, and he is incredibly calming. I hope we can all find a few minutes to pause, take a deep breath, and really soak this in. For information on Rob's book and retreats, click here: www.donothingbook.com Check out our website for more info on Duchenne and how we're changing the world: www.teamjoseph.org. Facebook: @teamjosephinfo Twitter: @teamjosephinfo Instagram: team_joseph Check out our website for more info on Duchenne and how we're changing the world: www.teamjoseph.org. Facebook: @teamjosephinfo Twitter: @teamjosephinfo Instagram: team_joseph

When Danny Bader was just 28 years old, in a terrifying accident, 8,000 volts of electricity tore through him – in effect killing him until he came back to life moments later. Danny says in those moments he connected with something bigger than us – and it transformed him and set him on his life's path. Between that near death moment and today, he's navigated guilt and suffering and thoughts of taking his own life. What he came to understand and embrace, is that none of us are immune to difficulty and heartbreak, but there is another side to those moments and periods in our life. Danny believes wholeheartedly in the power of the human spirit and our resilience to move us through the toughest of times and to create joyful lives filled with love and perspective. He talks today about having vision – understanding what we can't control, and influencing what we can. He shares 3 powerful questions to help build resilience, and to understand the difference between just living and really being alive. He's a best-selling author and a highly sought-after speaker. But more than that, he's committed to helping other people through his own struggles and his hard-won wisdom. He's real and generous and calming and practical. His near-death story is fascinating, but what's even more amazing is that he chose to make it matter....he makes us feel like no matter what tough stuff we're facing, we can still have a life filled with heart, hope and purpose. I hope he does the same for you.

Charlie Steward is a genome scientist, a dad to 2 children with rare diseases, and an incredible advocate. He spent more than 2 decades working on mapping the human genome. It was important work and a passion for him, but when his daughter Imogene was born it became personal. Shortly after her pre-term birth, Imogene was diagnosed with a catastrophic and potentially fatal form of epilepsy, and a short time later with cerebral palsy. Several years later, her little brother, Jasper, was also born pre-term, suffered severe brain damage and was also diagnosed with cerebral palsy. Charlie's story weaves together the intellect and brilliance of science with the emotion and heartache of being a dad to 2 special needs children. He may be the smartest person I've ever had a conversation with, but talking to Charlie is like spending time with a comfortable old friend. He shares with us the vulnerable, human side of his life – what a perfect day looks like with his family, and what his hopes and dreams are for his children. And he very gently explains the advances of and the hope in science, as well as the limitations and the acknowledgement that we still have much to learn. Charlie is now the patient advocacy lead for Congenica, a digital health company that is focused on improving lives by rapidly converting genomic data into usable information for patients and their doctors. His story is fascinating and filled with heart, hope and love.

Claire Hogan is a nationally certified and licensed professional counselor. Her passion is creating safe and unconditionally supportive space for her clients as they cope, grow and experience their unique life journey. But...she's a lot more than that to me. I sometimes talk about the earliest moments after my youngest son, Joseph, was diagnosed with Duchenne muscular dystrophy, and one of my first reactions amidst the horrible fear and grief was thinking to myself “I'm going to need a really good therapist to get through this!” And I did. And I have one. It's Claire. She's been my rock, my sounding board, and my guide for over a decade. She's walked with me through the diagnosis, caring for my elderly parents, navigating a life transition to single parenthood, and a lot more. There's such a needed focus on mental health today – thank goodness! So I wanted to pull back the curtain a little bit on my own journey. We're not going to talk about all the intimate details, but we decided to focus on something I've worked on and that we all need....and that is... self-care. Self care is a hot topic. And it's important. We're coming out of a global pandemic, our days and our lives often feel upside down, and we all need help sometimes. But with so much information out there about it, how do we dig into that? How do we figure out what self care means for us. And what it DOESN'T mean for us... Claire will give us some thoughts on WHY self care matters, how it impacts quality of life, and she'll teach us a technique, that in just 60 SECONDS each day, can make a big difference for us. What she shares with us requires no equipment, it's free, and you can do it anywhere! She has a wonderful take on the special stress for those of us who are caregivers, and how to approach taking care of ourselves so it doesn't feel stressful or selfish. I've said for years that “everyone needs a Claire in their lives.” I'm really excited that today, if you're listening in, you do in fact get Claire in your life for at least these next 30 minutes or so. This is for everyone – men, women, kids, caregivers, non-caregivers -- I'm so glad you're here with us for this conversation!

On episode 5, we're talking about a whole lot of things with Mandy Vogler -- through Mandy's beautiful story, we're going to touch on parenting and adoption, grace and faith and finding peace. Mandy is a public health nurse, but she's known in her town as “the lady with 10 kids” – she and her husband always hoped for a big family, but they had no idea what life had in store for them. Her story centers on giving birth to six children, navigating the heartbreak of multiple miscarriages, and traveling half way around the world two different times to two different countries to adopt 4 children. Mandy is driven by a profound faith and a strong belief in the purpose for her life. When her son Judah was diagnosed with Duchenne muscular dystrophy a couple of years after they brought him home from China, it was that deep faith that helped her navigate the heartbreaking diagnosis, begin to move forward, and find her way to acceptance and peace. Mandy gives us a really intimate look into their bustling life – including the low moments of struggle and questioning God, as well as the joy and love in this family that she and her husband created. Even if you don't have 10 kids – because not many of us do – and no matter what you believe in – or don't – it's a gift for all of us to get to know Mandy's incredible strength and her sweet, gentle spirit. I'm in awe of her and I think you will be too! For more info on Duchenne and how we're changing the world, visit us at: www.teamjoseph.org. Facebook: @teamjosephinfo Twitter: @teamjosephinfo Instagram: team_joseph

Today we're talking about making your way through a diagnosis, devastation, a life....that you didn't plan for.....with my friend Lauren Fritz. Lauren is the mom to two sons with Duchenne muscular dystrophy – but she's so much more – she's a longtime trauma and grief counselor. She worked for years with families in crisis – dealing with loss and catastrophic medical issues, and the heartache of wanting to help their child. But so much changed for her when both of her sons were diagnosed with Duchenne...this brutal, progressive muscle wasting disease, that has no cure. Having always been the helper, she now became the mom – the family – that needed help. Lauren has an amazing perspective on living in, as she calls it, the in-between – the place in life that holds both joy and despair. She found peace, joy, and her way forward by saying “screw the standards” and designing a life for her family that redefined happiness. She offers beautiful and very personal reflections on letting go of expectations, being present, and moving from being overwhelmed and devastated to feeling joy again. Lauren is wise and kind and gentle. Through sharing a really intimate look into her own life – both the joys and the struggles -- she gives so much comfort. And most important, I think she helps all of us feel like, no matter what you're making your way through right now, you will find peace and joy again. I hope this is an episode you want to share with your friends and download and listen to over and over again. For more info on Duchenne and how we're changing the world, visit us at: www.teamjoseph.org. Facebook: @teamjosephinfo Twitter: @teamjosephinfo Instagram: team_joseph

Blu Sanders is a songwriter, photographer, and musician. He's written songs with some of the best in country music. He spent years working with the Eli Young Band, and he's been out on the road as an assistant tour manager and photographer with Miranda Lambert. Many nights she would bring him out on stage to sing with her. But Blu isn't about glitz and glamour. The conversation we have today is one of grit and grace and a whole lot of love. When his dad was diagnosed with ALS – Lou Gehrig's disease -- Blu left Nashville and the music business for 18 months to go home to take care of his dad in the final months of his life. He talks openly about the challenges of caregiving.... the honor and the anger and the beautiful moments. Blu's story is one of selflessness and quiet determination, but there's more to his story. Beyond taking care of his dad, Blu was in a race against time....to bring an old car back to life, as his dad's life faded. For most of us, cars are meant to take us from one place to another – but in Blu's case, a 1941 Chevy Deluxe – as Blu calls it – a dusty old family relic -- was so much more. Although he couldn't fix his dad, he did fix this car -- A car that had been sitting in pieces in the backyard of his childhood home in El Paso, Texas for over 20 years. This car became a focal point, a reason for friends to gather, a temporary respite among the daily struggles of caregiving. And Blu was NOT a car guy – he struggled to rebuild that car. Blu says his story is about relationships and commitment and grease and sweat. It's about “the grim reality of a terminal disease coupled with life lessons from a Chevrolet.” He is humble and honest about the toll of caregiving, the beauty of simple things and time.... just time.... with ones we love. His very intimate story is one of love, dying, and ultimately, his dad's final ride. To learn more about Blu's book, The Forty One, and his story of caring for his dad, please visit www.blusanders.com. For more info on Duchenne and how we're changing the world, visit us at: www.teamjoseph.org. Facebook: @teamjosephinfo Twitter: @teamjosephinfo Instagram: team_joseph

Tonya Dreher made it through a serious health crisis with breast cancer, including multiple surgeries and extensive treatment. On the day her treatment ended, she thought she was out of the woods. But the next morning, she and her husband, Steve, received test results for their youngest son, Gus, and had to face yet another devastating diagnosis. When Gus was diagnosed with Duchenne muscular dystrophy, a degenerative progressive muscle wasting disease, Tonya and Steve started a non-profit to raise money to fund research. But after a few years, Tonya wanted to do something bigger. So, she put a team together, and with only 8 months of training, she flew halfway around the world to test her physical and emotional strength by climbing to base camp of Mount Everest. She wasn't an athlete, but she wanted to climb in honor of her son and all the other boys who can't. Fueled by determination and a fierce love for Gus, Tonya pushed herself beyond anything she'd ever done before, making it to base camp and reading the names of hundreds of boys with Duchenne into the wind. Tonya says her journey changed her. She not as afraid as she used to be and she feels better equipped to handle what comes her way. And she believes anyone can do it....using grief and heartache as a path to bravery and boldness. For information on joining Tonya's team for her next climb, contact her at: tbdreher@yahoo.com Check out our website for more info on Duchenne and how we're changing the world: www.teamjoseph.org. Facebook: @teamjosephinfo Twitter: @teamjosephinfo Instagram: team_joseph

Michael Lo Sapio was an accomplished high-school and college athlete, and he's now a teacher and coach. His life has been centered around physical ability and speed and endurance. That focus changed for him when both of his sons were diagnosed with a degenerative muscle disease – Duchenne muscular dystrophy. When he was faced with the heartbreak of a dad who couldn't fix his boys, Michael was determined to build the best life possible for them. And he did it in a really unconventional way – he bought a farm! With no background in working the land or raising livestock, he figured it all out by watching YouTube videos. He built a life for his boys that centers on the land and nature and adventure and fun. They are living each day in the shadow of a brutal disease, but that doesn't steal their joy and the beautiful memories they're creating. Michael says that he stepped so far out of his comfort zone to create this life for his boys because he decided to embrace the moment and, in his words, to “choose love.” His is a story of family, and faith and love....and navigating a devastating diagnosis with grace and grit and a focus on joy. Check out our website for more info on Duchenne and how we're changing the world: www.teamjoseph.org. Facebook: @teamjosephinfo Twitter: @teamjosephinfo Instagram: team_joseph

In 2008, my youngest son was diagnosed with a devastating form of muscular dystrophy....Duchenne...and I had to figure out how to keep going....how to navigate through tough times, knowing that those early days were only the beginning. Like all the struggles in our lives, Duchenne didn't come with an instruction manual. What I craved in the early days, and what I lean on most in these advanced stages – is connection....that antidote to isolation. I've learned that good conversations and real, raw stories prop us up – they are a way for us to gain strength from each other. It's how we borrow belief when our own is faltering. I'll share some of my own story, but we hear from many other people who are figuring out how to make their way. This isn't someplace where we'll have all the answers. But it's a place where we can learn from each other and find kindred spirits while we're in the middle of the journey. We're better together. This podcast is a connector; a vehicle for storytelling. It's about what do we do in the tough moments – it's about how we navigate the unimaginable, and the regular everyday heartache. It's about how we make our way – not around it, but right through it. I hope every episode will make you think and feel connection and hope. I hope you'll find meaning in the extraordinary....AND in the ordinary. And I hope you'll take even just one small bit of wisdom or happiness from every guest. Welcome to Making Our Way.