Braxley the Brave

10/11/2026

I’m not sure I’ll ever find the right words to describe how incredibly humbling yesterday was. ❤️

Yesterday was the 2nd Annual Backyard Ultra in New Town, Missouri, benefiting the ACTA2 Alliance and Braxley the Brave.

Last year, this event raised just under $4,000. This year? They’ve already surpassed $20,000! 🤯

But as incredible as that number is, it’s not the money that left me speechless. It’s what these people showed up and were willing to put themselves through for a cause that means so much to our family.

For those unfamiliar, a backyard ultra is a true test of physical and mental endurance. You push your body beyond exhaustion, battle your own mind, and keep showing up for another mile, even when everything in you wants to stop.

And in a way, that’s exactly what living with MSMDS looks like.

Our ACTA2 warriors endure physical and mental challenges that most people will never fully understand. They face obstacles they didn’t choose, battles they can’t walk away from, and uncertainty about what tomorrow might bring. Yet they keep going. And so do the families standing beside them.

Yesterday, 125 participants collectively completed 2,590 MILES! To put that into perspective, that’s roughly the distance of driving from New Town, Missouri, to Los Angeles, California, AND BACK!

The winning runner completed an unbelievable 79 miles, and the winning rucker finished approximately 50 miles. The event didn’t wrap up until 3 AM, when those final two participants came back in.

Just let that sink in.

All of those miles. All of that exhaustion. All of those people choosing to keep going.

For an ultra-rare disease that most of the world has never even heard of.

THAT is what humbles me.

And beyond the miles and the fundraising, we met some truly incredible people yesterday. People who came as complete strangers but left feeling like friends. People who took the time to learn about Braxley, ask questions, share their own stories, and genuinely care about a disease they may have never heard of before.

The world is full of really, really good people. And yesterday was such a beautiful reminder of that.

As I shared in the video, living with an ultra-rare disease can be incredibly isolating. There are so few families in the world who truly understand this journey. But yesterday, standing in front of a crowd of people who chose to show up for our daughter and others like her, I felt anything but alone.

And I think that’s what I’ll carry with me long after the miles and fundraising totals are forgotten. Not just what these people accomplished, but how they made our family feel.

There are so few individuals in this world living with MSMDS, yet somehow, this community continues to build something extraordinary. There is real hope. There is momentum in research. And there are people who believe so deeply in the mission of the ACTA2 Alliance that they’re willing to push themselves to their absolute limits to help move it forward.

To my sister, brother-in-law, Alex, their friends, the volunteers, sponsors, and every single person who showed up yesterday: THANK YOU. I hope you know that what you’ve done goes so far beyond fundraising.

You’re showing families like ours that we aren’t fighting alone. You’re giving our children a voice. And you’re helping turn hope into the possibility of more tomorrows.

125 people. 2,590 miles. One incredibly rare disease. And a whole lot of people refusing to give up. ❤️

From the bottom of our hearts, thank you for continuing to walk, run, and fight alongside us.

And as Braxley said herself at the end of the video, “Thank you!” 🦓❤️

09/21/2026

Victor is a little boy in Belgium, about the same age as Braxley, who is also fighting MSMDS. Although I’ve only met Victor’s parents once over Zoom, I know exactly what they mean when they say, “Mom and Dad are tired.” We may live thousands of miles apart, but we are walking the same path.

This disease is exhausting. The appointments, the unknowns, the advocating, the constant worry—it takes a toll on parents and on the family and friends who walk beside us.

But there is also so much hope. ❤️ Across the world, families like ours are fighting for these kids, and incredible doctors, researchers, and advocates are fighting right alongside us.

We’re tired. But we’re hopeful. And we keep going. To everyone who continues to walk this road, fight this fight, and carry some of the weight alongside us—thank you. ❤️

Papa et Maman sont fatigués… 😪

Aujourd’hui, journée d’examens au MontLegia- Victor grandit super bien.
Il commence à se poser des questions sur sa maladie et craint l’hôpital, c’est normal mais pas toujours facile à gérer comme parents.

Être parent d’un enfant atteint d’une maladie grave, ça endurcit, mais ça ne rend pas les choses plus faciles.

Avec le temps, on apprend (un peu) à encaisser les mauvaises nouvelles, les examens, les hospitalisations et les incertitudes.

Mais être plus fort ne veut pas dire que les difficultés disparaissent. Les craintes pour l’avenir sont toujours présentes. Certaines pensées reviennent, certains jours plus que d’autres. On apprend simplement à vivre avec.

Victor va très bien, il est plus en forme que jamais! L’opération de remplacement du cathéter se précise pour la fin d’année.
Mais depuis notre retour de Boston, je crois aussi que nous ressentons particulièrement le poids de ces dernières années. Nous sommes fatigués. Physiquement, mais surtout émotionnellement. Nous manquons d’énergie, parfois même pour des choses qui semblaient simples auparavant. Comme si, après avoir tenu si longtemps, le corps et l’esprit nous rappelaient qu’ils ont aussi leurs limites.

Ça fait tellement longtemps que nous voulons être fort que nous sommes fatigués, tout nous semble difficile. Est-ce cela la vie de parents d’un enfant à besoin spécifiques?

Malgré les innombrables marques de sympathie, les encouragements, les dons pour Victor, malgré tout ça nous nous sentons parfois seuls : seuls avec nos peurs, seuls à connaître les implications de la maladie, sur les plans médicaux, organisationnels, seuls avec trop de choses à gérer chaque jour, chaque semaine. Malgré nos efforts, nos discussions tournent souvent autour de Victor et de tout ce qui touche au MSMDS. Ceci doit parfois être fatigant pour notre entourage, comme ça l’est pour nous!

Bref. Un jour à la fois 😌

💡♥️Pour faire un don pour Victor via la Fondation Roi Baudouin :

https://donate.kbs-frb.be/~share?cid=266&lang=fr_FR

09/21/2026

If you know Braxley, you know this girl LOVES Halloween. 🎃👻 It’s been her favorite since she was itty bitty.

We found the coolest little hidden gem — Jack’s Lighted Trail at Eckert’s in Belleville! ✨🎃 Safe to say, it was right up Braxley’s alley.

If you have a little Halloween lover, add this one to your fall bucket list! 🧡🍂

08/28/2026

🚨 TOMORROW IS THE DAY! 🚨

We can’t wait to see everyone tomorrow for the 2nd Annual Braxley the Brave All Vehicle Ride! 💜🦓

And remember — you don’t have to participate in the ride to come out and join us! If you can’t make the ride, come out for dinner, stay for some live music by Jason McKenzie, grab some raffle tickets, and spend the evening with us!

🐟 Fish Fry starts at 4:30 PM
Some of the BEST fried fish you’ll ever have!
💜 $15 a plate
💜 Kids under 10 eat FREE! Yes… FREE! 🙌

🎶 Then stick around for live music by Jason starting at 6:00!

And we have to give a shoutout to the Braxley the Brave shirts this year because they turned out SO GOOD! 😍 If you ordered one for event pickup, they’ll be waiting for you tomorrow — and we cannot wait to see everyone wearing them!

Whether you’re joining us for the ride, coming for some amazing fried fish, listening to music, or just stopping by to show your support, we’d love to have you.

💜 Hope to see you tomorrow! 🦓

08/21/2026

Braxley’s first day of pre-school. She wants to be a superhero when she grows up. Little does she know, she already is 🥹🦸🏻‍♀️

08/15/2026

‼️ Two days left to order a Braxley the Brave shirt!!! ‼️

If you’re not able to attend the event, shirts can either be shipped directly to your house, or let us know and we can grab them for you! ☺️

There’s multiple color and design options! 💜🩵 There’s something for everyone - even the kiddos!

Don’t miss your chance! 🫶🏼

https://braxleythebrave.itemorder.com/shop/home/?fbclid=IwRlRTSATtZy90ZGNwBO1lYXBkb2YBZmRpZBZQyEj1yjXts6EIQEa32YlWO2A_MpF_ZXh0bgNhZW0CMTEAc3J0YwZhcHBfaWQKNjYyODU2ODM3OQABHntSzFHxT8CEVCKLOFC9inQhr0YG2F9nF3_fbCfG3rsjyhKYb70Wg-tu3MvB_aem_7V1Pfc911aU7Y06gVL0wWw

Online ordering for Braxley The Brave ends on Mon, Aug 17, 2026 (11:59 PM CDT)

08/08/2026

💜 Reminder to get your t-shirt order in 🩵

🚨 Deadline is August 17th! 🚨

I just purchased ours and am still in such awe of the designs that Nathan created. The butterfly with the real depiction of the heart and the words describing our MSMDS warrior 🥹. He did SO good 👏🏻

https://braxleythebrave.itemorder.com/shop/cart/?fbclid=IwVERDUATkedl0ZGNwBNmId3Bkb2YFZmRpZBZQuef-pylyWAJP3S60LqrVzWSWpSNQZXh0bgNhZW0CMTEAc3J0YwZhcHBfaWQKNjYyODU2ODM3OQABHmgw-ywiiWIByEOkjsCXvT52jNqg6UJ9jXwHpQnsdcxfeRRCKPpejP91NAX-_aem_LV7NUhZcfDGOsXuMfpP8fA

Online ordering for Braxley The Brave ends on Mon, Aug 17, 2026 (11:59 PM CDT)

08/05/2026

Friends, family, and supporters of Braxley the Brave… this is going to be a long post, but this is a BIG announcement that I’ve been dreaming of hearing and I hope you’ll join me in my excitement.

When I opened this announcement, I sat there and cried.

Not because Braxley has a treatment today.

Not because we’ve reached the finish line.

But because, for the first time, the finish line feels real.

When federal funding for rare disease research was being cut, I won’t lie… I was terrified. It felt like years of progress could disappear overnight. As the mom of a little girl with an ultra-rare genetic disease, you already spend every day wondering when the next complication will come, when the next scan will change everything, or when the next phone call will bring news you aren’t ready to hear. You live with the constant feeling that the other shoe could drop at any moment.

So to read that the VESSEL Project, led by Dr. Patty Musolino and her incredible team at Massachusetts General Hospital, has been awarded up to $25.8 million in funding…

The relief is hard to put into words.

For just a moment, I wasn’t thinking about fear.

I was thinking about hope.

The science behind what this team is doing is truly groundbreaking. Over the next five years, they’ll be working to develop a way to deliver gene editing directly to the cells of the blood vessels to treat MSMDS and other rare vascular diseases at their genetic cause—not just the complications they create.

For a disease as incredibly rare as MSMDS, this kind of investment is almost impossible to comprehend. Just a few years ago, I don’t know that any of us would have believed we’d be reading an announcement like this.

But I also want to be honest.

This is not a guarantee, but it is the first major step.

There is still so much we don’t know. We don’t know if this therapy will ultimately work. We don’t know how long it will take. And because MSMDS is such a heterogeneous disease, we don’t know whether one treatment will work the same for every patient. Every child experiences this disease differently, with different levels of complications and severity.

There is still an enormous amount of work ahead.

Which is exactly why we can’t stop now.

If anything, this is the moment to push even harder.

Research doesn’t end because a grant was awarded. Families are still traveling across the country for natural history studies. Researchers still need data. Advocacy organizations still need support. Clinical trials still have to happen. Treatments still have to prove they are safe and effective before they ever reach children like Braxley.

Every fundraiser. Every donation. Every share. Every conversation. Every person who chooses to stand beside our family continues moving this mission forward.

To everyone who has supported Braxley over the last three years… this moment belongs to you, too. ❤️ You have helped carry us through some of the darkest days imaginable, and you’ve helped build the momentum that made announcements like this possible.

I cannot tell you how hopeful I feel today.

Not because our journey is over.

But because, for the first time, I can truly picture where it might lead. I have always felt hopeful, but now it feels concrete.

And maybe the part that makes me emotional more than anything else…

I cannot wait for all of you to see this through with us.

You’ve watched Braxley fight through open-heart surgery as a baby. You’ve celebrated birthdays, prayed during hospitalizations, followed our trips to Boston, supported our fundraisers, and loved our little girl as if she were your own.

One day, I hope you’ll also be here to celebrate the day we can say that together… we made it.

That this community watched a little girl grow up with an ultra-rare genetic disease until the day the mutation that caused it could finally be treated.

That’s the update I’m dreaming of writing.

Today isn’t the finish line.

But today, for the first time in a very long time…

it feels like we’re finally running toward one. 💜

06/27/2026

06/27/2026

Today I’m wearing my sunglasses for Braxley. 🕶️💜💙

Like many children living with Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS), Braxley was born with permanently dilated pupils. Bright sunlight, glare, and even cloudy days can be painful for her eyes, so sunglasses aren’t just an accessory—they’re something she relies on every day.

But MSMDS is so much more than light sensitivity.

This ultra-rare ACTA2 condition also affects Braxley’s blood vessels, putting her at risk for life-threatening complications like aortic disease and stroke. There are currently no approved treatments or a cure.

Our family is hopeful because of the incredible researchers working to change that—but they can’t do it without support.

Today, I’m asking you to help spread awareness and, if you’re able, consider making a donation to support research.

🕶️ Put on your shades.
📸 Share a selfie.
💜 Donate $5.
👥 Tag 3 friends to keep it going.

Kirsten Hodson Cydney Long Abbey Stults

Let’s show some love (and some cool shades) for MSMDS.

https://www.zeffy.com/en-US/peer-to-peer/turn-msmds-day-into-more-than-awareness?fbclid=IwZnRzaASs4aBleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEeDwRzmi_HyKFRVc6E1IdIhXOuT-WzifsoMDiZsWSwbqYbPdv2GFmY0ape6OI_aem_c8uxFp_hhDp76ju39GJanw