Seattle WALK to End Hydrocephalus

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Seattle WALK to End Hydrocephalus Join us on Saturday, September 12, 2026 at a NEW LOCATION in Magnuson Park!

The Seattle WALK to End Hydrocephalus supports the education, advocacy and research programs of the Hydrocephalus Association - including research done locally at Seattle Children’s Hospital. Gather with participants from as far away as Montana who understand the challenges of living with this chronic neurological condition on September 17, 2022 at Magnuson Park, Seattle WA.

Day 30 — Awareness Month ends. Hydrocephalus doesn’t. 💙🧠For 30 days, we’ve filled this page with hydrocephalus awareness...
09/30/2026

Day 30 — Awareness Month ends. Hydrocephalus doesn’t. 💙🧠

For 30 days, we’ve filled this page with hydrocephalus awareness.

We’ve talked about what hydrocephalus is.

We’ve talked about shunts, surgeries and warning signs.

We’ve talked about school, adulthood, research, caregivers, siblings and community.

We’ve shared facts.

We’ve shared stories.

We’ve WALKED together.

And now September is coming to an end.

But for more than one million Americans living with hydrocephalus, tomorrow isn’t the end of anything.

Hydrocephalus doesn’t end when Awareness Month does.

The need for research continues.

The need for better treatments continues.

The need for knowledgeable medical care continues.

The need for community and support continues.

And so does the need for awareness.

So as we close these 30 days, we have one final request:

Keep talking about hydrocephalus.

Keep sharing what you’ve learned.

Keep supporting research.

Keep showing up for this community.

And when someone tells you they or someone they love has hydrocephalus, remember that you now know a little more about what that might mean.

To every person living with hydrocephalus:

We see you. 💙

To every family walking beside them:

You’re part of this community, too.

And to every donor, volunteer, medical professional, researcher, WALK team and supporter who continues to show up:

Thank you.

September ends tonight.

Our work doesn’t.

Our hope doesn’t.

And our community isn’t going anywhere. 💙

Day 30 of 30.

For the last 29 days, we’ve talked about hydrocephalus.We’ve talked about shunts and surgeries.We’ve talked about sympto...
09/29/2026

For the last 29 days, we’ve talked about hydrocephalus.

We’ve talked about shunts and surgeries.

We’ve talked about symptoms, school, research and lifelong care.

We’ve talked about families, siblings, caregivers and community.

We’ve shared facts.

We’ve shared stories.

And through all of it, you’ve been here.

Thank you. 💙

Thank you to everyone who read a post and learned something new.

Thank you to everyone who shared one and helped that information reach someone else.

Thank you to our WALK teams, donors and volunteers.

Thank you to the medical professionals and researchers working to improve the lives of people with hydrocephalus.

And most importantly, thank you to the individuals living with hydrocephalus and the families who trust us with their stories.

Awareness doesn’t require everyone to become an expert.

Sometimes it starts with simply knowing the word.

Hydrocephalus.

Knowing that people of all ages live with it.

Knowing that treatment isn’t a cure.

Knowing that every person’s experience is different.

And knowing that behind every statistic is a real person with an entire life that extends far beyond a diagnosis.

If you know more about hydrocephalus today than you did 29 days ago, then this month mattered. 💙

Thank you for learning with us.

Day 29 of Hydrocephalus Awareness Month. One more day.

Day 27 — Then & Now. 💙🧠For many families, a hydrocephalus diagnosis begins with uncertainty.Sometimes it comes during pr...
09/27/2026

Day 27 — Then & Now. 💙🧠

For many families, a hydrocephalus diagnosis begins with uncertainty.

Sometimes it comes during pregnancy.

Sometimes shortly after birth.

Sometimes years—or even decades—later.

And one of the first questions is often:

“What will the future look like?”

The difficult answer is that no one can completely know.

Hydrocephalus affects every person differently, and there is no single path that tells us exactly what someone’s life will look like years from now.

That’s why “Then & Now” photos in our hydrocephalus community can be so meaningful.

The baby who once fit in someone’s arms may now be a teenager.

The child who spent time in a hospital may now be heading to school, playing a sport, making art, working toward greater independence—or discovering an entirely different path that’s uniquely theirs.

And adults living with hydrocephalus continue writing new chapters, too.

None of that means the challenges aren’t real.

It means a diagnosis is the beginning of a story—not the ending.

So today we’d love to see your Then & Now. 💙

Share a photo in the comments if you’re comfortable and tell us how many years are between the two.

Let’s fill this post with the faces and stories that make up our hydrocephalus community.

Day 27 of Hydrocephalus Awareness Month.

Day 25 — Behind every team name is a story. 💙🧠👟If you’ve ever been to the Seattle WALK to End Hydrocephalus, you’ve seen...
09/25/2026

Day 25 — Behind every team name is a story. 💙🧠👟

If you’ve ever been to the Seattle WALK to End Hydrocephalus, you’ve seen them.

Team shirts.

Team signs.

Team names.

Some are funny.

Some are meaningful.

Some carry the name of someone very loved.

But behind every team is a story.

A child diagnosed with hydrocephalus.

An adult who has spent years navigating the condition.

A family who remembers exactly when hydrocephalus became part of their lives.

Friends who wanted to do something to help.

People walking in honor or memory of someone they love.

And year after year, those individual teams come together and become something much bigger:

A community.

That’s one of the beautiful things about the WALK.

You arrive wearing the name of your person.

But you walk alongside people carrying names and stories completely different from yours.

Different journeys.

Different reasons for showing up.

One shared hope for better treatments, greater awareness and a better future for everyone living with hydrocephalus.

So today we’re celebrating all of our Seattle WALK teams. 💙

Thank you for putting on the shirts.

Thank you for fundraising.

Thank you for sharing your stories.

And most importantly, thank you for continuing to show up.

Day 25 of Hydrocephalus Awareness Month.

Day 24 — No two hydrocephalus journeys are the same. 💙🧠There is no single picture of what it means to live with hydrocep...
09/24/2026

Day 24 — No two hydrocephalus journeys are the same. 💙🧠

There is no single picture of what it means to live with hydrocephalus.

Some people are diagnosed before birth.

Others are diagnosed as infants, children, teenagers or adults.

Some people are treated with a shunt, while others may be candidates for different surgical treatments.

Some go many years without needing another procedure.

Others experience repeated surgeries and complications.

Some people living with hydrocephalus need significant support throughout their lives.

Others live very independently.

And many people’s needs fall somewhere in between—or change over time.

Every hydrocephalus journey is different.

That’s why comparing stories rarely tells us very much.

Someone else’s experience doesn’t predict yours.

One person’s challenges don’t diminish another person’s.

And there is no prize for having the “easiest” or “hardest” hydrocephalus story.

There are simply people doing their best to live full lives with a condition that can affect each of them differently.

So when someone shares their hydrocephalus story, one of the most meaningful things we can do is listen without comparing.

Different journeys. Same community. 💙

Day 24 of Hydrocephalus Awareness Month.

Day 23 — Hydrocephalus by the numbers. 💙🧠We’ve spent this month sharing stories about hydrocephalus.Today, let’s look at...
09/23/2026

Day 23 — Hydrocephalus by the numbers. 💙🧠

We’ve spent this month sharing stories about hydrocephalus.

Today, let’s look at some of the numbers.

💙 More than 1 million Americans are living with hydrocephalus.

💙 Approximately 1 in every 770 babies will develop hydrocephalus.

💙 Hydrocephalus can affect anyone at any age.

💙 An estimated 50% of shunts placed in children fail within two years.

💙 More than 36,000 shunt surgeries are performed each year in the United States.

💙 And there is still no cure for hydrocephalus.

Those numbers are important.

But they’re not the whole story.

Behind every statistic is a person living with hydrocephalus.

Behind many of those people are families, friends, caregivers and communities walking alongside them.

That’s why we WALK.

That’s why we fund research.

That’s why we keep talking about hydrocephalus long after WALK day is over.

Because more than 1 million isn’t just a statistic.

It’s more than 1 million individual stories that deserve awareness, better treatments and hope for a future without hydrocephalus. 💙

Day 23 of Hydrocephalus Awareness Month.

Day 22 — Words matter. And so does listening. 💙🧠What’s the “right” way to talk about someone living with hydrocephalus?T...
09/22/2026

Day 22 — Words matter. And so does listening. 💙🧠

What’s the “right” way to talk about someone living with hydrocephalus?

The answer may depend on who you ask.

Some people prefer person-first language, such as “a person with hydrocephalus.”

Others may feel that hydrocephalus is an important part of their identity and prefer different language.

Some proudly use terms like hydro warrior.

Others don’t connect with that term at all.

And that’s okay.

There doesn’t have to be one phrase that speaks for an entire community.

People living with hydrocephalus have different experiences, different perspectives and different preferences about how they describe themselves.

One of the simplest ways to be respectful?

Listen.

Ask when you’re unsure.

Follow the person’s lead.

And remember that the person standing in front of you is always more than the medical terminology used to describe their condition.

Awareness isn’t only about learning how to talk about hydrocephalus.

It’s also about making sure we’re listening to the people who actually live with it. 💙

Day 22 of Hydrocephalus Awareness Month.

Day 21 — Finding your people. 💙🧠One of the most powerful parts of the hydrocephalus community is exactly that:Community....
09/21/2026

Day 21 — Finding your people. 💙🧠

One of the most powerful parts of the hydrocephalus community is exactly that:

Community.

Hydrocephalus journeys can look incredibly different.

Different ages at diagnosis.

Different treatments.

Different numbers of surgeries.

Different challenges.

Different victories.

But sometimes there’s an immediate connection that comes from meeting someone who understands a part of your life that usually requires a lot of explaining.

That’s what community can provide.

A place to ask questions.

A place to share experiences.

A place to celebrate.

A place to have a hard day without having to explain why it’s hard.

And sometimes simply the reassurance of knowing:

We’re not the only ones.

That’s one of the things we love about the Seattle WALK to End Hydrocephalus. Fundraising and awareness are incredibly important—but so is bringing people together.

Families meet other families.

Kids see other kids with shunts and scars like theirs.

Adults living with hydrocephalus connect with others who understand.

And year after year, our community gets to show up for one another. 💙

Hydrocephalus may be what brought us together.

But the relationships we build are so much bigger than a diagnosis.

Day 21 of Hydrocephalus Awareness Month.

Day 20 — A diagnosis doesn’t define someone’s potential. 💙🧠Hydrocephalus can affect people in many different ways.Some i...
09/20/2026

Day 20 — A diagnosis doesn’t define someone’s potential. 💙🧠

Hydrocephalus can affect people in many different ways.

Some individuals may experience challenges with learning, memory, vision, balance, coordination, fatigue or other areas. Others may experience different challenges—or very few.

But a diagnosis cannot tell you everything about a person.

It can’t tell you what they’ll love.

What they’ll be good at.

What goals they’ll set.

What relationships they’ll build.

What they’ll accomplish.

Or what their version of independence and success will look like.

There is no single picture of what a life with hydrocephalus looks like.

And there shouldn’t be.

People living with hydrocephalus are students, athletes, artists, professionals, friends, partners, parents, volunteers and so much more.

Some need significant support. Others live very independently. Many fall somewhere in between—and those needs can change throughout a lifetime.

Awareness isn’t about pretending hydrocephalus doesn’t create real challenges.

It’s about understanding those challenges without using them to decide someone’s limits for them.

See the diagnosis.

Provide the support.

And most importantly, see the person. 💙

Day 20 of Hydrocephalus Awareness Month.

Day 19 — “Is it the shunt?” 💙🧠It’s a question many people living with hydrocephalus—and the people who care for them—may...
09/19/2026

Day 19 — “Is it the shunt?” 💙🧠

It’s a question many people living with hydrocephalus—and the people who care for them—may find themselves asking.

A headache can simply be a headache.

Fatigue can simply mean someone needs rest.

Nausea can have countless causes.

But some common, everyday symptoms can also overlap with symptoms of a shunt problem.

That’s one reason knowing an individual’s normal can be so important.

What do their typical headaches look like?

Is this fatigue unusual for them?

Are symptoms getting worse or appearing together?

Is there a change in behavior, alertness, vision, balance or another area that isn’t typical?

Shunt malfunction can be serious, and concerning or unusual symptoms should be discussed with the person’s medical team or evaluated urgently when appropriate.

But living with hydrocephalus shouldn’t mean living every moment expecting something to go wrong.

For many individuals and families, part of the journey is learning that balance:

Be informed. Know the warning signs. Know your normal. And keep living. 💙

Day 19 of Hydrocephalus Awareness Month.

Address

6505 NE 65th Street
Seattle, WA
98115

Telephone

+18885983789

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