Making Our Way

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.