Team Reed-Fighting VWM

Team Reed-Fighting VWM Reed, from Jesup, Iowa started his fight to find a cure for VWM on November 1, 2014. Currently, there is no cure for VWM. Let's work together to change this.

Team Reed is a community group focused on spreading awareness and education of Vanishing White Matter(VWM)/(CACH) and aiding research efforts to find treatments and a cure for this rare genetic disorder. Reed was born on December 3, 2012, and was a "normal' developing child until, November 1, 2014, Reed went down for a nap and when he woke, he struggled to stand and take steps. The family continu

ed to watch him struggle and noticed his right foot turning in. After no clear answers as to why this was happening, Jesse, Erika, and Reed headed for Iowa City to see a neurologist. On February 25, 2015, Reed was diagnosed with Leukodystrophy and then Vanishing White Matter. Leukodystrophy known as Vanishing White Matter Disease (VWM) is a degeneration of the brain. We are in a race against time to Find a Cure for VWM! Time is not on our side; most children born with this genetic disease die at an early age. Research efforts are greatly underfunded and there is little awareness.

Some rides are about the miles. This one is about love, memories, and carrying Reed with us every step — and pedal — of ...
05/16/2026

Some rides are about the miles. This one is about love, memories, and carrying Reed with us every step — and pedal — of the way. This year, our RAGBRAI ride means even more. We’re riding for Reed.
For his joy.
For his laughter.
For the way he brought people together everywhere he went.

We have teamed up with Takeover Sales Custom Apparel to make a fun shirt similar to our bike jerseys for RAGBRAI, Whether you’re riding, cheering from home, or just love a fun Reed shirt 😉💚 every shirt represents love, support, and the incredible village that continues to surround us.🚴‍♂️💚

Orders can be shipped directly to you or picked up at our house in Jesup.

PLEASE NOTE: Jesup pickup and shipping are the only available fulfillment options for the store.

The Team Reed RAGBRAI store will close on July 1st, so be sure to get your orders in before then! 💚

*** All pickup orders will be completed approximately 1.5–2 weeks after the store closes.

https://takeoversales.myshopify.com/collections/team-reed

(I know I normally make our shirts but we wanted to make a full color option and I just don't have the setup for that)

Most of you know that 7 years ago, Reed and I started dreaming about bringing a splash pad to our community. Thanks to t...
05/08/2026

Most of you know that 7 years ago, Reed and I started dreaming about bringing a splash pad to our community. Thanks to the support, generosity, and kindness of so many people in Jesup that dream became of reality, three summers ago.

The splash pad was always one of Reed’s fun places. It was a fun, inclusive space where him to be like the other kids. I can still hear the belly laughs from him.

After Reed’s passing last fall, the City of Jesup honored him by renaming the park “Reed’s Park.” It means to us to know his name and spirit will continue to live on in a place filled with joy and laughter.

Over the past several months, Papa Scott and I have been working on one more addition to the park — a little library. Today, we were able to install it and fill it with books and DVDs for families to enjoy.

We hope that Reed’s Park continues to be a place of happiness, inclusion, community, and love for years to come. We hope you and your families will enjoy the splash pad, the little library, and all the beautiful moments made there. 💚

City of Jesup
Jesup IA Splash Pad

Too all the mamas on Bereaved Mothers Day, I see you I love you I’m with you “Because of Reed”There is a version of Moth...
05/03/2026

Too all the mamas on Bereaved Mothers Day, I see you I love you I’m with you

“Because of Reed”

There is a version of Mother’s Day
that lives quietly beside the rest—
not filled with noise or celebration,
but with a love that didn’t get the time it deserved.

That’s where I am.

I am a mother because of Reed.
Because of the way he changed me—
not just in the moments I held him,
but in the way I see the world now.

Softer in some places,
stronger in others.

There are things I didn’t get—
some milestones, some memories,
the everyday moments that feel so ordinary
until they’re the ones you miss the most.

But there are things I did get, too.
A love deep it didn’t get enough time to grow old.
A bond so real it didn’t end when his life did.

Reed is in everything now.
In the way I notice the child who needs a little extra patience.
In the way I fight for inclusion, for kindness, for making sure every child is seen.

Because he matters.
Because he existed.
Because he is still mine.

But I am not without a child.
I carry him—
in my heart,
in my voice,
in the way I love others.

I say his name as much as I can
I try my best to honor his life-in everything I do

Because of Reed

05/01/2026

Happy May Day

Update: We have had several people ask and I’ve been meaning to let everyone know. We have made the difficult decision n...
04/19/2026

Update: We have had several people ask and I’ve been meaning to let everyone know. We have made the difficult decision not to host the Team Reed Golf Tournament this year. Full disclosure my heart just wasn’t into it and the work it takes to hold the event. Maybe, hopefully, this won’t be forever, but for now, we needed a break.

Please Read A Miracle for Ella Rose amazing update on the clinic trial
04/18/2026

Please Read A Miracle for Ella Rose amazing update on the clinic trial

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. 💛

Because of YOU, 30 local kids will receive a Sunshine Basket 💛Each one was put together with so much love and intention ...
04/13/2026

Because of YOU, 30 local kids will receive a Sunshine Basket 💛

Each one was put together with so much love and intention — a little self-care, something creative, a book or craft, a snack, a fun toy or game… and a few extra surprises sprinkled in. My hope is that each basket brings a smile, a moment of joy, and a reminder that they are cared for.

As I put these together, I prayed over every basket and for every child who will receive one. I also prayed for each of you who gave so generously. I talked to Reed the whole time, holding onto the hope that his love will shine through in every single basket.

This truly would not have been possible without your kindness and support. Thank you for helping spread light, love, and a little extra sunshine to these kids. 💚

Jenifer
Lacey
Robert
Monika
Audra
Jess
Kimberly
Kerri
Thelma
Dustin, Natalie & Emberly
Loretta
Andrea
Chelsea
Stephanie
Michelle
Kelsey
Linda
Maddy
Kathy
Rachael
Deanna

🚨 Final call 🚨 We will be placing the bike 🚴  jersey order next week, please read the original post for more info
04/10/2026

🚨 Final call 🚨
We will be placing the bike 🚴 jersey order next week, please read the original post for more info

We’ve decided to form a Team Reed RAGBRAI team this year 💚🚴‍♀️

We’ll be riding two days:• Independence → Manchester• Manchester → Dubuque

We would absolutely love for anyone to ride with us in honor of Reed. There’s no obligation to ride both days — if you’d like to join us for just one day, that’s perfectly okay too! Also, there's no obligation to buy a jersey to ride with us; we just wanted to offer it. The more, the merrier.

We’re having some Team Reed bike gear made and wanted to offer it to anyone who might want to wear it in support. (T-shirts with a similar design are also in the works and will hopefully be available later.)

Below is the available gear and pricing:
Jersey (men’s & women’s cut) – $80→ $65 if 5 or more are ordered
Long Sleeve Jersey – $85→ $70 if 5 or more are ordered
Women’s Tank – $78→ $63 if 5 or more are ordered
Button-Up – $90→ $70 if 5 or more are ordered
Jacket – $125→ $85 if 5 or more are ordered

Sizing:• Jerseys — we recommend sizing up one• All other items — true to size

Please note: these prices are not marked up. This is not a fundraiser — we simply want to ride in honor of Reed and would love to see others wearing Team Reed alongside us.

If you’re interested in riding or ordering gear, comment below or message me 💚st

Ekkk the joy this brings me, I’m so excited to put these baskets together for some of our local kids 💚 thank you so much...
04/01/2026

Ekkk the joy this brings me, I’m so excited to put these baskets together for some of our local kids 💚 thank you so much to those that have sent donations either items or monetarily!!
Jenifer
Lacey
Robert
Monika
Audra
Stephanie
Jess
Michelle
Kimberly
Kerri
Chelsea
Thelma
Loretta

If you missed the post about out Sunshine Baskets you an read moreabojt it here:

https://www.facebook.com/share/1CdkQD841y/?mibextid=wwXIfr

☀️Updated with Amazon list: this is just some suggestions☀️https://www.amazon.com/hz/wishlist/ls/796ALEVYNS7L?ref_=wl_sh...
03/29/2026

☀️Updated with Amazon list: this is just some suggestions☀️

https://www.amazon.com/hz/wishlist/ls/796ALEVYNS7L?ref_=wl_share

Just wanted to throw this out there to the community

☀️ Sunshine Baskets ☀️
A few weeks ago, I found myself wandering down the holiday aisle at the store. I felt this strong pull to put together an Easter basket… but also the heaviness of not having someone to make one for.
Which led me to wonder—are there organizations that do something like an Angel Tree, but for Easter? So I reached out to a local contact to see if there might be kids in our local community in need who could use a little extra sunshine this season.

So we came up with the idea of Sunshine Baskets —in honor of Reed 💚

My goal is to put together 24 baskets: • 8 for elementary-aged kids • 8 for middle school-aged kids • 8 for high school-aged kids (Each group split between boys and girls)

I plan to make these happen no matter what, but I wanted to open it up to anyone who might want to be part of it.

If you’d like to contribute, I’m collecting small basket-friendly items like:
✨ Bubbles
✨ Stickers
✨ Sidewalk chalk
✨ Fun pens
✨ Notebooks
✨ Fidgets & sensory toys
✨ Snacks
✨ Self-care items
✨ Eye/face masks
✨ Small games
✨ Coloring books
✨ and any other fun little items you can think of

Thank you for helping me spread a little sunshine and love in Reed’s honor 💚

I hope to make up the baskets mid April so will take any donations for a couple of weeks

Address

Jesup, IA
50648

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