A Miracle for Ella Rose

04/30/2026

For VWM Families, this means:
HOPE
PROGRESS
A PATH FORWARD

We are not there yet, but we are closer than ever.

Please help us:
• Raise awareness 2026 ULF Scientific Symposium and 2026 ULF Family Conference

• Support research Bonkowsky Lab
Prof. M.S. (Marjo) van der Knaap

• Advocate for rare disease funding

Together, we are stronger than VWM.







Hilton/chicago Oakbrook Resort and Conference

04/30/2026

Please don’t forget to call :
(317) 759-4725

Leave a short message of encouragement, love, or hope for Ariana 💙

It’s simple:
• Say your name
• Wait for the tone
• Share your message

Listen live: www.mix105indy.com

Every call matters. Every voice makes a difference.
Let’s surround Ariana with love 💙



Indianapolis Mix
VWM Families Foundation

04/25/2026

So happy to see our friends in the same journey as Ella!

04/22/2026

04/19/2026

Imagine your brain is a city.

• Neurons are the buildings where life and activity happen.
• Oligodendrocytes are the electrical insulation that keeps communication flowing.
• Astrocytes are the maintenance and utility crews keeping everything running smoothly.

Now imagine the fire alarm in that city never shuts off. 🚨

That’s what happens in Vanishing White Matter (VWM) disease.

A stress pathway in the brain called the Integrated Stress Response (ISR) gets stuck in the “ON” position, like a fire alarm that never stops ringing.

When that alarm keeps blaring:

⚠️ The maintenance crews (astrocytes) can’t do their jobs properly.
⚠️ The insulation (myelin) around brain connections begins to break down.
⚠️ Slowly, the city’s infrastructure collapses.

This is why the brain’s white matter begins to vanish.

But researchers are working on a way to quiet the alarm.

A drug called fosigotifator is designed to calm the ISR, essentially turning down the fire alarm so the maintenance crews can get back to work and protect the brain.

For families living with VWM, this research represents real hope.

💙 Please share to help raise awareness about Vanishing White Matter (VWM) disease and Fosigotifator.

04/18/2026

11 months. Just 11 months. 💕🎉

We are still trying to find the words for what we’re seeing.

On Wednesday night, we had a call with the MGH team to review Ella’s latest MRI from her recent trip to Boston, and we’re still processing it all.

On the left is Ella’s most recent MRI. On the right is where we started. The docs believe what appears to be happening is something we never dared to hope for… areas that once showed significant loss now look like they may be showing signs of change, possibly even regrowth of myelin.

Let that sink in.

For a condition where we were told to expect decline…
That Ella had a 5-8 year life expectancy from date of diagnosis (which was 7 years to the date yesterday)…
For a journey that once felt so uncertain…
This feels nothing short of unbelievable.

But what’s even more incredible is that we’re not just seeing changes on a scan, we’re seeing them in Ella.

In the last 11 months:
✨ She’s gained strength and endurance
✨ Her awareness and engagement have grown
✨ Her voice, once barely heard, is now forming words and even sentences
✨ Her balance, coordination, and independence continue to improve
✨ Her personality is shining brighter than ever (with plenty of sass 💁🏼‍♀️)

This image is powerful. But living it, watching her fight, grow, and surprise us every single day, that’s the real miracle we have been waiting SO long to see. This journey has been so surreal for us.

We know there is still a long road ahead. We know this journey isn’t over. But today, we are pausing to take this in… to feel the weight of hope… and to say how deeply grateful we are.

To the doctors, researchers, and this trial… thank you. To everyone who has prayed, supported, and believed alongside us… thank you.

And to our girl…

Ella, you are rewriting what we thought wasn’t possible. 💛

04/12/2026

On our way back to Charlotte! 💕 Happy to say Ella had a great visit and seemed to recover faster this time from her MRI and LP. This week we will have a call with the team to review her MRI imagery. We cannot wait to see what that beautiful brain looks like now and of course we will share her results. 💪🏼

We picked up her daily medicine for the next six months while we were here. The next visit is in October, so see you soon Boston! 🛫

04/10/2026

💕 All checked in and ready to spend the day at the Research Center at MGH. Ella starts the day off with various testing, a blood draw, ECG, sedated MRI and lumbar puncture. 💕

She has gained 13 lbs and grown 6 inches since starting the trial.

Happy 1 year anniversary to the 🎉🎉

04/09/2026

PT eval in progress, and Ella is already showing off all she’s been working so hard on 💪🏼✨

Uploading a little glimpse of her strength, determination, and progress 💛

Up next: her neuropsych evaluation today, followed by an MRI and lumbar puncture tomorrow, she continues to face it all with so much bravery and strength! 💛

04/08/2026

We wish we could say we were off to somewhere tropical for spring break, but this girl is headed to Boston for the first time in 6 months.

We cannot wait to show them all the good things that are happening in her world! 💕

Wings and all, she is ready! 🛫

04/05/2026

We’d love your help supporting our dear friend Lara as she raises funds for an adaptive vehicle her family needs for safe and accessible travel. 💕

A Lara é uma menina com 9 anos e em 2019 foi diagnosticada com leucodistrofia V… Princesa Lara precisa do seu apoio para Leucodistrofia vanish white matter

03/30/2026

✨ One Year. One Miracle. ✨

Because of the , we have witnessed more progress in Ella this year than we ever thought possible.

We’re so happy to share that our flights are officially booked, we’re heading back to Boston to mark one full year in this life-changing trial! 🎉🤍

And truly… what a year it has been.

Here are just some of the incredible changes we’ve seen:

• In four years, Ella gained only 1–2 lbs. In this trial? 13 lbs.
• Her hair is thicker
• Her awareness of the world around her has grown so much
• Her nystagmus has lessened
• IEP goals crushed, and rewritten
• The shakiness in her arms and hands has disappeared
• Where we once heard 1–2 words… we’re now hearing 5-word sentences and words with real syllables

And hearing her voice, really hearing it, for the first time… is something we will never be able to fully put into words.

• Her sass is in full force (and yes, her big brother is feeling it 😅)
• Her strength and endurance are through the roof
• She’s eating more and trying new foods and drinks
• Her balance continues to improve
• She’s standing on her own for longer than ever before
• Her assisted walking is steadier and lasting longer
• And her belly laugh? Bigger, louder, and more contagious than ever

✨ Today for the first time, Ella clearly connected the dots to her name, way better than she ever has before!

Because of all of this progress, I started wondering… could crutches be next? Before I even had the chance to ask PT introduced them! They are definitely a challenge for her but something we have no doubt she can master. 💕💕

To every single person who has supported us through this Boston journey, thank you.

We could never, ever do this without the love, encouragement, and support that surrounds Ella every single day. 🤍

Here’s to year TWO!!!! ✨