Braxley the Brave

04/02/2026

📝 Sorry it’s a long one, but oh so important 🫶🏼

Last week, I shared about the MSMDS conference—how it changed us emotionally.

But there was a second reason we went to Boston… and this one changed us in a completely different way.

Braxley is now part of a Natural History Study for MSMDS.

And I want to explain what that means—because before this, I didn’t fully understand it either.

A natural history study is how researchers learn what this disease actually looks like over time—how it progresses, what symptoms appear, and what patterns exist across patients.

Because MSMDS is so rare, there simply isn’t enough data. And without data… there are no treatments, no protocols, no clear path forward.

So families like ours choose to participate.
To share Braxley’s medical information, her tests, her experiences—so researchers can start connecting the dots.

Each child in the study is followed for 3 years. We come back to Boston the same week of the same month every year—Braxley’s happens to be in June.

And each month, they bring in two MSMDS patients.

Braxley was paired with Hailie—a teenager who traveled all the way from Dublin, Ireland!

I’m not sure how we got so lucky to be paired with them… but Hailie, her sister, and her mom are some of the sweetest, most genuinely kind people we have ever met. The kind of people you feel grateful to know almost instantly.

That’s one of the unexpected gifts in all of this.

But I won’t sugarcoat it—the week is hard.

The days are long.
They’re filled with tests, evaluations, and appointments across what feels like almost every specialist under the sun.

It’s not easy for a 2-year-old to understand why they’re being poked, prodded, and examined. And it’s not always easy for us either… especially when the news we hear isn’t always what we hope for.

There are moments that are heavy.
Moments that remind you exactly what you’re up against.

But here’s the part that changed everything for us—

Not only is Braxley contributing to this study… we are now directly connected to the very people working tirelessly to save her.

We now have experts who understand MSMDS at the highest level helping oversee her care. People who can guide us, give recommendations, and help us make the best decisions to keep her as safe and as healthy as possible.

That alone is something we will never take for granted.

We were also able to meet up with another MSMDS family who lives in Boston.
And while I wish MSMDS is not what brought these people into our lives… I can honestly say they are some of the kindest, strongest, most incredible people we have ever met.

There is something about this community that is just different.

And in between the appointments, we made sure to soak in every bit of Boston we could.

We explored Salem, saw the USS Constitution, visited the aquarium, ate some amazing seafood, saw Paul Revere’s house, and did a lot of walking and soaking in how different Boston is compared to the Midwest.

Because even in the middle of hospital visits and hard conversations… we are still making memories. We are still living.

And that’s something I never want to lose sight of.

This study isn’t easy.
But it matters.

Every appointment, every test, every piece of data—it all brings researchers one step closer to understanding MSMDS, and one step closer to finding answers.

Braxley may be small, but she is helping pave the way for something so much bigger than herself.

And we are so incredibly proud of her.

If you’ve been following our journey, thank you. Truly. And if you feel moved to help—whether that’s sharing, supporting our fundraisers, or simply continuing to follow along—it all matters more than you know.

We’re building something here.
For Braxley.
For families like ours.
For the future.

And we’re not stopping. 💜🩵

03/26/2026

🚨*Warning - writing this post was heavy on my Mama heart*

June 2025 is a month that changed us forever.

This was our trip to Boston—one that carried so much weight, hope, and purpose. We went for two reasons, and today I want to share the first: the 3rd Annual International MSMDS Conference.

Walking into that space felt overwhelming in the best and hardest ways all at once. For the first time, we weren’t alone in this.
We learned more about MSMDS than we ever have before. We met the doctors and researchers who are dedicating their lives to understanding this disease and fighting for kids like Braxley. People who see our children not as statistics, but as their mission.

But what impacted us most… wasn’t the science.

It was the people.

For the first time, we met other families living this same life. Other parents who carry the same fears. The same unknowns. The same weight that never really goes away. Parents who have held their child’s hand and said, “it’s going to be okay,” while quietly carrying the reality that we don’t always know that it will be.

We are so incredibly blessed with the support system we have at home. Our family and friends have carried us in more ways than we can count. But this… this was different.
Because there is something about connecting with someone who truly understands—without explanation, without words—that changes you.

It changed us.

We built connections with families we can now lean on. People we can reach out to, ask questions, share fears, and celebrate wins with. Before this, I never thought we would meet another family walking this same path. And now, we’re not walking it alone.

And then, there was a moment at the conference that stuck with us—something we will never forget:

“No one is coming to save the day.”

At first, it sounds heavy. But what it really meant was this:
If we want change for our children, we have to be part of creating it.

The research is there. The doctors are there.
But they need us.

That moment lit a fire in us. It’s what pushed Nathan and I to fully step in—to get involved with the ACTA2 Alliance, to start fundraising, to start showing up in a bigger way.

No one is coming in on a white horse.
So we’ll be the ones to bring the brigade.

And if you know me, you know this—I will not stop until my girl gets the help she deserves.

If our story moves you, please share it. Awareness matters more than people realize.

We’re currently preparing for our next fundraiser—our golf outing. If you or someone you know loves to golf, we would love to have you. And if you don’t, there are still so many ways to be part of this.

Because this fight? It takes all of us.

Stay tuned for next week—I’ll be sharing the second reason we went to Boston, and it’s just as important. 💜🩵

03/22/2026

We are still in awe of last night. The Trivia Night for Braxley the Brave was nothing short of incredible.

The turnout, the energy in the room, the laughter, the generosity… it all meant more than we can properly put into words. To look around and see so many people show up—not just to have fun, but to support Braxley and the mission of the ACTA2 Alliance—was overwhelming in the best way.

While we didn’t capture every table in photos, please know that every single person there played a part in something truly meaningful. Because of you, we are able to continue pushing forward—funding research, raising awareness, and fighting for kids like Braxley.

It’s easy to feel small against something as big as a rare disease. But nights like this remind us that we are anything but alone. And in fact, we have a HUGE village and support system behind us. 🫶🏼🥹

From the bottom of our hearts—thank you for showing up, for believing in this mission, and for loving our brave girl.

💜🩵

03/21/2026

We’re so excited to officially share something that means so much to our family… 💜🩵

Hitting Greens for Genes ⛳️
📅 May 16, 2026
Lincoln Greens Golf Course, Springfield, IL

This isn’t just a golf outing—it’s something deeply personal.

As many of you know, our daughter Braxley was diagnosed with a rare genetic condition caused by an ACTA2 mutation. It’s something no family ever expects to face, and it’s changed the course of our lives in ways we never could have imagined.

But through it all, we’ve also found purpose.

This event is about turning something incredibly hard into something meaningful—raising awareness, funding critical research, and supporting the work being done by the ACTA2 Alliance to help children like Braxley not just survive, but thrive.

Over the past year, we’ve seen firsthand what advocacy, community, and determination can do. Now, we’re taking it a step further.

Whether you’re a golfer, a business, or someone who simply wants to support the cause—there is a place for you in this.

👉 Follow this page
👉 Share it
👉 Get involved

We truly believe that together, we can make an impact bigger than we ever could alone.

Thank you for being part of this with us.

Spots are filling up fast - be sure to sign up today!⛳️

(See comment for Hitting Greens for Genes page and the online registration form — no worries if you’ve already submitted your team, we’ve got you down 🫶🏼)

— Nathan & Ali
Proud parents of Braxley
ACTA2 Alliance Board Members

03/19/2026

Slowly, but surely, we are getting caught up to almost present day 😉.

April & May 2025 🌸

Spring has always felt like a season of renewal — longer days, fresh air, and little reminders that life keeps moving forward. And last spring, we leaned into every bit of that.

We soaked up the simple, beautiful moments…
- Mowing with dad (one of her favorite “jobs”),
- a zoo day with cousins,
- ice cream enjoyed outside in the sunshine,
- and watching her light up during The Big Show finale at tumbling.

While we were living in these sweet, everyday moments… something bigger was just around the corner.

Next up: a trip that would bring us face to face with the people fighting for kids like Braxley — and give us even more hope for what’s ahead. 💜🩵

03/17/2026

We are so grateful for Dr. Julie Fleischer and the entire team working to make ACTA2 and MSMDS more understood. Their work isn’t just important… it’s life-changing!! 👏🏻

Last week, the ACTA2 Alliance was present at the Annual Clinical Genetics Meeting in Baltimore, organized by the ACMG - American College of Medical Genetics and Genomics. It was an incredible opportunity to reach around 3,000 genetics providers and speak directly with about 100 of them, raising awareness of ACTA2 & MSMDS.

These conversations matter. They help clinicians recognize the signs earlier, understand surgical risks, and ultimately provide better care for our children.

We’re especially grateful for the incredible team behind this effort:
Kara Skorge, Samantha Siefken, Abe Fleischer and Julie Fleischer, geneticist and member of our Scientific and Medical Advisory Board.

Not only did they educate new providers, but they also connected with clinicians already caring for ACTA2 patients, sharing updated research, resources, and opportunities to collaborate.

Samantha also presented new data on MSMDS patients, with plans to publish soon, another important step forward for our community.

This is what progress looks like: showing up, starting conversations, and making sure ACTA2 mutations and MSMDS are seen, understood, and recognized.

If you’re grateful for their work, let’s fill the comments with 👏👏👏 for this amazing team.

03/13/2026

It’s been a rough couple of weeks with the passing of one of our MSMDS warriors. Our hearts have been heavy, but we will keep her memory alive and keep pushing forward in her honor. Here’s the next little chunk of time in Braxley’s life that we’re catching up on.

February & March 2025

In just two short months, it felt like we watched our little girl blossom. Once she was back to full health, we got to see so much joy in the everyday moments—building magnetic towers, loving on her baby brother, matching outfits and tumbling with her cousin bestie, graduating to a big girl bed, enjoying ice shows, and taking her preschool pictures 😍.

It’s crazy how much she changed in such a short time. These months were full of growth, sweetness, and so many little moments we never want to forget.

It’s also been really special for us as her parents to look back and recap her life piece by piece. In the middle of living it all, it’s easy to forget just how much can happen in such a short time. Looking back on these memories has reminded us how much love, joy, and growth have filled her story.