McKenna Claire Foundation

11/03/2026

It’s been a little quiet here, and I apologize. There are definite seasons to grief, and for whatever reason, this fall has sent me back to some darker days.

There’s no rhyme or reason to it.

It’s hearing Miley Cyrus sing The Climb on the drive home from work, and suddenly the tears come. In an instant, I’m standing outside McKenna’s hospital room, trying to pull myself together before walking back in after hearing her diagnosis.

It’s watching families we know navigate this monster, watching their children fight while parents try desperately to preserve some sense of a normal childhood. And suddenly, I’m consumed by the guilt of telling McKenna, “We’re trying to make you feel better,” instead of telling her she was dying. We wanted so badly for her to find moments of joy for as long as she could.

It’s waking in the middle of the night with the agony of remembering how she lost her abilities, one by one, and the helplessness of knowing there was nothing we could do to stop it.

It’s feeling the constant need to do more…to make the foundation stronger, fund more research, and be more involved. But also knowing that work and the responsibility of providing benefits for our family sometimes limit what I can give.

The trauma of childhood cancer doesn’t follow a timeline. It doesn’t disappear when your child is declared NED or, in our case, when they pass away. The effects are life-changing for everyone involved. The ripple effects create waves that continue to rock your boat for the rest of your life.

I share all of this not for sympathy, but to let you know where I’ve been and that I’m fighting to find my way back.

Because our kids need us now more than ever. They need us to tell their stories, fight for research funding, and give them (and their families) something that every child deserves…HOPE for a future.

So please stay with us on this journey, even during the quiet seasons. Even when you don’t hear from us as often as you’d like.

You are making a difference. More than you know. ❤️

10/09/2026

The McKenna Claire Foundation’s Play It Forward Golf Tournament is just ONE WEEK away, and guess what? TWO FOURSOMES JUST OPENED UP!

So grab your friends and join us at Tijeras Creek Golf Club for a day of fun, food, friends… and a little golf thrown in for good measure! 😂🏌️‍♀️🏌️‍♂️

It’s a great day for an even greater cause, and we’d LOVE to have you join us!

⛳️ October 16 | Tijeras Creek Golf Club
Two foursomes available — who’s in?!

Don’t wait! These spots won’t last long!

https://e.givesmart.com/events/PAh/

10/06/2026

McKenna’s cells are still alive. And they’re still working.

Just last month—on September 17, 2026—a new study was published in Nature Medicine using SU-DIPG6 in preclinical models.

Researchers used McKenna’s cells to study how a commonly used anti-seizure medication, levetiracetam, affects communication between neurons and diffuse midline glioma cells.

This work adds to the growing understanding that the brain and the tumor don’t exist separately—the tumor can interact with the brain around it in ways that may influence its growth.

And this isn’t the only new research.

Earlier this year, a Nature Genetics study used DIPG6 to profile the effects of 372 clinically relevant drugs and investigate different tumor-cell states and potential treatment combinations.

Think about that. Fifteen years after we lost McKenna, her cells are still being grown, studied and used to ask new questions.

McKenna should be 23 years old. I wish more than anything that she were here.
But her story didn’t end when her life did.

Her cells are still here.

Her gift is still here.

And researchers are still searching for answers.

That is why we fund research. That is why we keep going. Because maybe one day, another seven-year-old will be diagnosed and her parents will hear something very different.

Instead of,

“There is nothing more we can do,”

they will hear,

“We have a treatment and this is our plan.”

For McKenna. For every child still waiting.
And for every family hoping for more time, let’s change the equation together.

Help us Shine a light, Grow a community and Pay it forward 🦋

10/05/2026

We are amazed and incredibly happy to celebrate Dr. Karl Deisseroth on being awarded the Nobel Prize in Physiology or Medicine this morning! Dr. Deisseroth is the husband of our own incredible Dr. Michelle Monje, whose dedication to children with brain cancer and to finding better treatments has touched so many lives

His groundbreaking work in optogenetics has helped transform our understanding of the brain and has been instrumental in moving the fields of pediatric neuro-oncology and cancer neuroscience forward.

Science, collaboration, curiosity and the relentless pursuit of answers are what give families like ours hope.

Congratulations Dr. Deisseroth! Here’s to more discoveries that change what is possible—and, someday, change the outcome for children like McKenna.

10/05/2026

So what does it actually mean when we say scientists are using McKenna’s cells?
It means her cells have become a tool for asking some really important questions.

🔬 HOW DOES DIPG GROW?

Scientists can study the biology that allows these tumors to survive and spread.

🧬 WHY ARE THERE DIFFERENT CELLS WITHIN THE SAME TUMOR?

Researchers have used SU-DIPG6 to study different tumor-cell populations and how they can behave differently—and even work together.

💊 WHAT MIGHT STOP IT?

McKenna’s cells have been used to test potential drugs and treatment combinations.

🧠 HOW DOES THE BRAIN INTERACT WITH THE TUMOR?

Researchers have used SU-DIPG6 in studies examining communication between neurons and tumor cells.

And perhaps most importantlly, scientists can keep asking new questions.
Because a living research model can be studied again and again.

One experiment leads to another.

One answer leads to another question.

And slowly, piece by piece, researchers learn more about a disease that has taken far too many children.

This is what research looks like.
And this is why funding matters.

10/02/2026

McKenna’s cells have traveled much farther than we ever could have imagined.

What began with a little girl in Huntington Beach and a research lab at Stanford has become part of an international scientific story.

Published research documents the use of SU-DIPG6 by researchers in:

🇺🇸 THE UNITED STATES - used by multiple researchers in multiple institutions across the U.S.

🇬🇧 THE UNITED KINGDOM
Including researchers at The Institute of Cancer Research, where McKenna’s cells were used to study different populations within DIPG tumors.

🇮🇱 ISRAEL
Where researchers have used SU-DIPG6 to investigate cellular stress pathways and potential treatment strategies.

🇦🇺 AUSTRALIA
Where researchers have used SU-DIPG6 in studies of DIPG metabolism and potential ways to make tumors more sensitive to treatment.

And this is only the published research trail we can accurately document. There are many laboratories that have received or used the cells that don’t appear in the public record.

Think about that.

A little piece of McKenna is helping scientists in laboratories thousands of miles apart ask questions about the same disease.

Her cells crossed oceans.

Her legacy crossed borders.

And her impact keeps growing.🦋

10/01/2026

In this picture, Dave and I are at Monje lab looking at McKenna’s cell line for the first time

Yesterday we talked about how one act can make a difference. Today, I want to show you what that one act became.

🦋 2011
McKenna dies at just seven years old. We decide to donate her tumor tissue to Stanford for research.

🔬 2015
McKenna’s tumor-derived cells are part of the newly emerging patient-derived DIPG research models. This was a huge breakthrough as due to the location of the tumor in the ponds, biological specimens, had not been available.

🧬 2017
Stanford researchers describe the SU-DIPG models and with help from McKenna Claire Foundation make the cells freely available through the Monje laboratory under material-transfer agreements.

🌎 2018 and beyond
Researchers outside Stanford begin using SU-DIPG6 to investigate tumor-cell diversity, invasion and how different populations of tumor cells interact.

And this is where the story gets bigger.
McKenna’s cells didn’t stay in one laboratory. They began traveling.

From one little girl’s tumor…
to laboratories…
to experiments…
to discoveries…
and eventually into research happening around the world.

A gift made in the middle of unimaginable grief became a resource for science.

And the journey isn’t over.

09/30/2026

Today is the LAST DAY of Childhood Cancer Awareness Month. I want to end this month with an important thought:

One act can make a difference.

In 2011, as McKenna was dying, we made the decision to donate her brain and spinal cord tissue to Stanford for research.

We had no idea then what that one decision would become.

McKenna’s tumor cells lived. They became a patient-derived cell line called SU-DIPG6.

And today, more than 15 years later, those cells are still being used by scientists to study pediatric brain cancer in multiple countries and institutions around the world.

One decision.

One little girl.

And a legacy that continues to grow.

As we close out Childhood Cancer Awareness Month, remember:

You don’t have to change the whole world to make a difference.

Sometimes, you just have to make one decision to do something that might help someone else.

And you never know where that one act might lead.

Follow us the next few days to find out where McKenna’s cells are being used and how she’s changing science.

09/28/2026

There have been a number of articles recently about pediatric cancer, the need for funding, and the cuts that have happened at the government level. We need you now more than ever. Please read.

A delayed clinical trial underscores the stakes of federal research funding cuts for children with DIPG, a deadly brain tumor with few treatment options.

09/26/2026

Our friends the Carrs at ChadTough should be celebrating Chad‘s 16th birthday today, they should be figuring out how to balance a birthday celebration for a highschooler while supporting his two older who brothers play college football. We often talk about how losing a child forces you to hold joy and grief at the same time. Read this article to see how Chad’s mom Tammi tries to find a balance on this day.

Video of Tammi Carr cheering for one son getting a shot in Michigan football's spotlight doesn't show the tears she sheds for the son who never will.