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Justin Jay Lopez

@justinjay_24

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Tomorrow is LGMD Awareness Day, and for me, this day is personal. 💚

I was diagnosed with Limb-Girdle Muscular Dystrophy at 13. I went from a kid who lived for basketball to eventually navigating life from a power wheelchair.

LGMD has taken a lot from me physically, but it has also helped me find my voice. Today, I use that voice to advocate, share my story, and push for more awareness, research, accessibility, and treatments.

I know a cure may not come in time to give me back everything LGMD has taken—and that’s okay. I’m fighting for the next generation.
I want the next 13-year-old diagnosed with LGMD to have options I didn’t have. I want them to dream about their future without wondering what this disease will take from them.

So tomorrow, help me make LGMD visible.
💚 Wear green for LGMD Awareness Day. And if you do, take a picture and tag me—I’d love to see it!

#LGMDAwarenessDay #LGMD #WearGreen #LimbGirdleMuscularDystrophy #RareDisease by @justinjay_24

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17 days ago

What a great night in Cleveland! ⚾️
Huge thank you to the Muscular Dystrophy Association for giving me and my family the opportunity to attend the Guardians game!

The opportunity came through MDA’s relationship with Rhys Hoskins, who has been a great supporter of MDA and the neuromuscular disease community. We didn’t get the chance to meet Rhys this time around, but I’m incredibly appreciative of him, MDA, and everyone who helped make the night possible.

It was a great night with family, good baseball, and another cool experience that has come through my involvement with MDA. And I have to give Cleveland some credit… they got the win and put on a pretty good show. 😂

Still a Tigers fan though. 🐯⚾️

Thank you again to MDA and everyone involved for making it such a memorable night! ❤️💙 by @justinjay_24

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a month ago

September is Muscular Dystrophy Awareness Month. 💚

For me, this isn’t just an awareness month—it’s personal. I was diagnosed with Limb-Girdle Muscular Dystrophy (LGMD) at 13 years old, and it has shaped a huge part of my life and the person I’ve become.

Living with LGMD comes with challenges that most people will never see or fully understand. But it has also given me a reason to use my voice—to advocate for accessibility, inclusion, better resources, more research, and ultimately a future where individuals and families affected by muscular dystrophy have more options.

This month, I’m asking my friends, family, coworkers, and network to take a little time to learn about muscular dystrophy and LGMD. Awareness may seem like a small thing, but awareness leads to conversations, conversations lead to action, and action creates change.
I’ll be sharing more throughout September, especially as we get closer to LGMD Awareness Day on September 30. 💚

#MuscularDystrophyAwarenessMonth #LGMD #LGMDAwareness #LGMDday2026 #TogetherWeAreStronger #DisabilityAdvocacy by @justinjay_24

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a month ago

Happy Birthday to my beautiful wife, Lexi! ❤️🎂

Another year older, another year of me wondering how I convinced you to marry me. 😂

You’re my best friend, my better half, my favorite person to annoy, and the one who somehow keeps our crazy little family together. You’re an incredible wife and an even more amazing mom to Tatum. ❤️

Life with you isn’t always perfect, but I wouldn’t want to do this life with anyone else. Through every high, every low, every laugh, every argument, and every “what do you want to eat?” conversation that goes absolutely nowhere… I’d still choose you every single time. 😂

I hope today reminds you just how loved and appreciated you are. You deserve the world, and since I can’t afford the whole world, hopefully having me forever is a close second. 😏😂

Happy Birthday, babe! I love you more than words can say. Here’s to another year of us getting older together while pretending we’re still young. ❤️🥳🎉 by @justinjay_24

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2 months ago

Yesterday we celebrated a huge milestone—
Tatum has officially been going potty consistently for multiple weeks! 🚽🎉

We promised him a special reward, so we took him to see Toy Story 5. Seeing the excitement on his face made it all worth it. ❤️

And since we're all excited for Moana, we couldn't leave without stopping for a few pictures by the poster. 🌊🌺

So proud of you, buddy! Keep up the great work. 💙 by @justinjay_24

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3 months ago

🇺🇸 **BIG NEWS!** 🇺🇸

I'm incredibly honored to share that I've been selected as a **delegate for LGMD Day on the Hill** this September in **Washington, D.C.!**

I'll be joining advocates from across the country to meet with members of Congress and raise awareness for **Limb-Girdle Muscular Dystrophy (LGMD)**—a rare, genetic, progressive muscle disease that affects every part of my daily life.

This opportunity means so much to me. For those who know my story, you know this isn't just a trip—it's a chance to use my voice to help create a better future for everyone living with LGMD and other neuromuscular diseases.

We'll be advocating for increased research funding, better access to care, and policies that improve the lives of individuals and families impacted by muscular dystrophy.

I'm grateful to everyone who has supported me throughout my journey. Your encouragement has helped make opportunities like this possible.

Washington, here I come! 🇺🇸💙

#LGMD #DayOnTheHill #MuscularDystrophy #Advocacy #RareDisease #TogetherWeAreTheVoiceOfLGMD #MDA #SpeakFoundation by @justinjay_24

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3 months ago

Most people hear the words "muscular dystrophy" and think it's one disease. The truth is there are many different types, and each affects the body differently.

I have Limb-Girdle Muscular Dystrophy (LGMD), which mainly affects the muscles around my hips, shoulders, and core. I've been living with it since I was diagnosed as a teenager, and it's shaped many parts of my life.

There have been challenges along the way, but it's also taught me determination, patience, and how important it is to keep moving forward no matter what obstacles are in front of you.
I wanted to share this image because it helps show just how many different forms of muscular dystrophy exist. Every person living with MD has their own unique story and experience.

If you know someone with muscular dystrophy, take a moment to learn about their journey. A little understanding can go a long way.

💚 Proud to be part of the muscular dystrophy community and grateful for everyone who continues to raise awareness, support research, and advocate for accessibility and inclusion.

#LGMD #MuscularDystrophy #MDA #DisabilityAwareness #Accessibility #RareDisease #StrongerTogether by @justinjay_24

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4 months ago

Very proud of Tatum this past morning! He did really well at the movies!! He loved the Super Mario movie! taken in Rave Motion Pictures-Fallen Timbers by @justinjay_24

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6 months ago

Last week, I had the opportunity to speak as an Ambassador for the Muscular Dystrophy Association during the Fill the Boot Campaign.

Standing in front of a room of firefighters and supporters, I shared something that’s shaped every part of my life—being diagnosed with muscular dystrophy at 13.

At that age, you don’t fully understand what it means.
You just know life changed.

I had dreams of playing professional basketball. And over time, I had to come to terms with the fact that the life I imagined wasn’t going to happen.

That reality hits you twice—physically and mentally.
You’re not just adjusting… you’re grieving a future you thought was yours.

But here’s the shift:
That moment didn’t end my story—it forced me to rewrite it.

Today, I’m a husband, a father, a leader, and an advocate.
Life didn’t get smaller—it just got different.

Organizations like the Muscular Dystrophy Association make that difference possible. Not just through research and resources—but by giving people hope when they need it most.

And that’s why the Fill the Boot Campaign matters.

To some, it’s just collecting donations.
To families like mine—it’s everything.

It’s independence.
It’s support.
It’s progress.
It’s someone choosing to show up for a cause bigger than themselves.

I also had my biggest “why” in the room—my wife and my 4-year-old son.

There was a time I didn’t know if I’d ever have this life.
Now I get to show up as a dad—and that’s something I don’t take lightly.

To everyone who participates in Fill the Boot:
What you’re doing is not small.

You’re impacting real people, real families, and real futures.

I’m one of them.

#MDA #FillTheBoot #DisabilityAdvocacy #Leadership #Purpose #Gratitude #Inclusion by @justinjay_24

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6 months ago

When I share that I’m disabled, I’m not asking for pity.

I’m not looking for reassurance that I “don’t look disabled.”

I’m not asking for comparisons to someone you know.

And I’m definitely not looking to be called “brave” for existing.

I’m sharing it for a reason.

For access.
For understanding.
For truth.
For representation.

Disability doesn’t make someone fragile or incapable.

It gives people a perspective the world — and our workplaces — need more of.

The goal isn’t sympathy
.
The goal is inclusion.

And sometimes inclusion starts with simply saying:

“This is who I am.” 💙

#DisabilityInclusion #Accessibility #Leadership #Representation #InclusionMatters by @justinjay_24

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7 months ago

Rare Disease Day always makes me pause for a minute.

I was diagnosed with Limb-Girdle Muscular Dystrophy when I was 13. At that age, you don’t fully understand what a “progressive neuromuscular disease” really means. You just know life is about to look different than you thought.

There were times I didn’t want to talk about it. Times I didn’t want it to be part of my identity. But over the years, I’ve realized it’s not something that defines me — it’s something that shaped me.

And I haven’t walked this road alone.

My parents carried more than I ever realized growing up. They adjusted, learned, supported, and never let me believe my life was smaller because of a diagnosis.

My wife, Lexi Lopez, lives this with me every day. The appointments. The flare days. The physical changes. The uncertainty. She doesn’t flinch. She just shows up.

My friends and family have never treated me like I’m fragile — they’ve treated me like I’m capable. That matters more than people know.

And now, more than anything, my motivation is my son, Tatum.

I want him to see that when life throws something hard at you, you don’t quit. You adjust. You adapt. You keep going. You do the right thing even when it’s inconvenient. You build a life anyway.

Rare Disease Day isn’t just about awareness for me. It’s about gratitude. It’s about community. It’s about continuing to push for better research, better accessibility, and better understanding — not just for me, but for everyone navigating something rare.

Life may look different than I planned at 13.

But it’s still full. It’s still meaningful. And we’re still moving forward.

Keep going.

RareDiseaseDay #MuscularDystrophy #LGMD #DisabilityAdvocacy #Inclusion #Resilience by @justinjay_24

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8 months ago

With this cutie ❤️
#luckyguy #blessed taken in Margaritaville Island Reserve Riviera Cancun by @justinjay_24

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8 months ago