Tyler's Hope for a Dystonia Cure

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Tyler's Hope for a Dystonia Cure

Tyler's Hope Foundation was established to advance research for a cure, discover treatments and to promote awareness and education of DYT1 Dystonia.

About Dystonia:

Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures. It can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords. Abilities such as cognition, strength and the senses are normal in Dystonia sufferers

, though speech can be impaired as a symptom. Dystonia is the third most common movement disorder after Parkinson’s Disease and Tremor. It does not discriminate, and affects people of every race and ethnic group and one-third of Dystonia patients are children. Dystonia affects more people than Muscular Dystrophy, Huntington’s Disease and Lou Gehrig’s Disease.

09/10/2026

Imagine doing something thousands of times.

Something you've practiced until you don't even have to think about it.

Then suddenly, your body won't let you do it the same way.

For Daniel Adair, drummer for Nickelback, that something was playing the drums.

Adair has publicly discussed his experience with task-specific focal dystonia, a neurological movement disorder that can interfere with highly practiced, repetitive movements.

Think about that.

The talent didn't disappear.
The years of practice didn't disappear.
The knowledge of how to play didn't disappear.

But the movement changed.

Yesterday, we talked about how focal dystonia can affect athletes performing incredibly precise movements. Today, we're showing you another place it can appear: music.

Musicians spend thousands of hours training their hands and bodies to perform movements with extraordinary speed and precision. When dystonia interferes with those movements, it can threaten not only someone's ability to perform, but the career and identity they've spent years building.

And that's another reason dystonia can be so difficult to understand.

It doesn't always affect the same people.
It doesn't always affect the same part of the body.
And it doesn't always look the same.

🧡 But every person affected deserves better answers, better treatments and ultimately, a cure.

Share Daniel's story and help someone learn something new about dystonia today.

Dystonia doesn't stop. Neither will we.

tylershope.org

09/10/2026

TWO DAYS. ONE REASON. A CURE.

Friday night, we gather under the stars. ⭐
Saturday, we tee up for a cure. ⛳

Different experiences. Same mission.

For 20 years, The Hope has brought together families, researchers, clinicians, friends, businesses and supporters who believe a cure for dystonia is possible.

This October, we gather again.

⭐ Evening Under the Stars
Friday, October 23
Granville Plantation, Newberry

Bring your friends, colleagues or clients for an unforgettable evening supporting the research and progress moving us closer to a cure.

⛳ The Hope Tournament
Saturday, October 24
Hawkstone Country Club, Gainesville

Limited golf spots remain. If you want to play in this year's tournament, now is the time to reserve your spot.

Whether you join us Friday night, Saturday on the course, or both, you're helping carry forward a mission that has united this community for 20 years.

Two days. One reason. A cure.

For tickets, golf availability and sponsorship information:
[email protected]

20 Years of Hope. And We're Not Done Yet.

A special thank you to CPPI, Title Sponsor of The Hope Weekend, for helping make it possible.

tylershope.org

09/09/2026

Ever heard of “the yips”?

Sports fans know the term.

A golfer suddenly can't make the putt he's made thousands of times. A baseball player struggles to make what used to be a routine throw.

It's often described as nerves, pressure or simply getting inside your own head.

But sometimes, there may be more to the story.

Research has shown that for some athletes, the involuntary movements associated with the yips can be a form of task-specific focal dystonia, a neurological movement disorder that interferes with highly practiced movements. Not every case of the yips is dystonia, but the connection is an important one.

Professional golf has seen some of its greatest players struggle with the yips, including World Golf Hall of Famer Ernie Els.

Former MLB All-Star Chuck Knoblauch famously developed severe throwing difficulties during his career. Neurologist and dystonia expert Dr. Stanley Fahn believed Knoblauch's highly publicized case was focal dystonia, although Knoblauch was not publicly confirmed as having received that diagnosis.

Think about what that means.

You've performed a movement thousands upon thousands of times.

Your brain knows exactly what you want to do. But suddenly, your body won't cooperate.

That's one of the reasons dystonia is so difficult to explain and so important to understand.

🧡 During Dystonia Awareness Month, we're showing you just how many different faces this neurological disorder can have.

You may have heard of the yips.

Now you know that sometimes there may be much more behind them.

Share this with a sports fan who has probably heard the term but never knew about its connection to dystonia.

Dystonia doesn't stop. Neither will we.

tylershope.org

09/08/2026

Imagine building your career around your voice, and then slowly losing control of it.

For decades, Diane Rehm's voice was heard by millions of listeners as the host of The Diane Rehm Show.

Then her voice began to change.

Speaking became increasingly difficult. Her voice sounded strained and interrupted. And for years, she didn't know why.

In 1998, Rehm was diagnosed at Johns Hopkins with spasmodic dysphonia, also known as laryngeal dystonia, a neurological disorder that causes involuntary spasms in the muscles of the voice box.

Think about that for a moment.

For a broadcaster, her voice wasn't simply how she communicated. It was her career.

Yet Rehm returned to broadcasting and has spoken publicly about her condition, helping others understand a form of dystonia many people may never have heard of.

Her story is also an important reminder:

Dystonia doesn't always look the way you expect.

It can affect a child's ability to walk.
A musician's ability to play.
A person's ability to write.
Or a broadcaster's ability to speak.

Different people. Different symptoms. The same need for greater understanding, better treatments and ultimately, a cure.

🧡 This Dystonia Awareness Month, help us introduce more people to the many faces of dystonia.

Share Diane's story. Help someone learn something they didn't know yesterday.

Dystonia doesn't stop. Neither will we.

tylershope.org

09/08/2026

20 YEARS IS A MILESTONE. A CURE IS THE FINISH LINE.

Twenty years deserves to be celebrated.

Twenty years of people showing up.
Twenty years of generosity.
Twenty years of researchers pursuing answers.
Twenty years of families refusing to stop believing.

But at Tyler’s Hope, 20 years was never the goal.

A cure is.

This October, we gather again for The Hope Weekend, not simply to celebrate how far we’ve come, but to help move us closer to where we’re going.

⭐ Evening Under the Stars
October 23, 2026
Granville Plantation, Newberry

⛳ The Hope Tournament
October 24, 2026
Hawkstone Country Club, Gainesville

Want to be part of what comes next?

For tickets and sponsorship information:
[email protected]

20 Years of Hope. And We’re Not Done Yet.

Thank you to CPPI, Title Sponsor of The Hope Weekend, for helping make it possible.

tylershope.org

09/07/2026

Dystonia has a name. So do they.

This is the Staab family.

For them, dystonia isn't something they learned about during Dystonia Awareness Month. It has been part of their family's life for more than two decades.

They know the physical pain dystonia can cause.

They know the emotional toll of watching someone you love fight a disorder you cannot fix.

They know the financial strain that can come with years of treatment, care and adapting a family's life around a disease.

But they also know something else.

Hope.

For 21 years, the Staab family has refused to accept that there is no cure as the end of the story.

They founded Tyler's Hope. They have helped fund research. They have brought researchers, physicians, families and supporters together. And through every setback, every unanswered question and every year without a cure, they have kept fighting.

Not because the fight is easy.

Because Tyler Staab, Samantha Staab, and every other person living with dystonia deserve an answer.

Last week, we introduced you to dystonia.

Now we want to introduce you to the people who give us every reason to defeat it.

🧡 Follow their stories. Share them. Help more people understand what dystonia takes from families and why research matters.

And when you're ready, join them in the fight.

21 years. Still fighting. Still believing. Still hoping.

Dystonia doesn't stop. Neither will we.

tylershope.org

09/06/2026

You may have never heard of dystonia.

For thousands of families, there was probably a time when they hadn't either.

Then it became part of their everyday life.

Imagine watching your child struggle with things other children barely have to think about. Walking. Writing. Eating. Speaking. Playing with friends.

Imagine knowing there are treatments that may help manage symptoms, but hearing the words no parent wants to hear:

There is no cure.

That's why awareness matters. But awareness alone isn't enough.

Families affected by dystonia need answers. Researchers need the resources to find them. And all of us have an opportunity to help.

🧡 If you learned something about dystonia this week, don't let it stop with you.

Share this post so someone else learns its name.

Tell someone about Tyler's Hope.

And if you're able, help fund the research working toward a future without dystonia.

You may not have known about dystonia yesterday.
Today, you can help change its tomorrow.

Give hope. Fund research. Help find a cure. Become a partner in hope.

tylershope.org

09/05/2026

PARTNERS IN HOPE: CPPI

For 20 years, The Hope Weekend has brought together families, researchers, clinicians, volunteers and supporters around one ambitious goal:

A cure for dystonia.

That work doesn't happen without partners willing to invest in the mission.

We are proud to recognize CPPI as the Title Sponsor of the 2026 Hope Weekend.

Their support helps make this weekend possible, bringing our community together to raise critical funds and continue investing in research that moves us closer to a cure.

Because partnership is about more than putting a logo on an event.

It's about believing in what's possible.

On October 23 and 24, CPPI will stand alongside families living with dystonia, researchers pursuing answers and a community determined to keep pushing forward.

This is what it means to be a Partner in Hope.

Join us for Evening Under the Stars on October 23 at Granville Plantation in Newberry, followed by The Hope Tournament on October 24 at Hawkstone Country Club in Gainesville.

20 Years of Hope. And We're Not Done Yet.

Thank you, CPPI, for believing in what's possible.

tylershope.org

09/05/2026

There is no cure for dystonia. Yet.

That last word matters.

For DYT1 dystonia, researchers have already identified the gene associated with the disorder. We aren't starting from zero. Science has given us important pieces of the puzzle.

But identifying the gene and understanding how to turn that knowledge into treatments that change the course of the disease are two very different things.

That is where research comes in.

Every study. Every discovery. Every new understanding of what is happening in the brain brings us another step closer to the answer families affected by dystonia are waiting for.

A cure.

🧡 Today, help us turn awareness into action.

Share this post. Tell someone about dystonia. Support the research. Help us keep moving toward the day when we can finally remove one word from this sentence:

There is no cure. Yet.

Let’s change that.

Give hope. Fund research. Help find a cure.
tylershope.org

09/04/2026

When you see dystonia, you see the muscles. But that’s not where the whole story begins.

The twisting. The contractions. The abnormal postures. Those are the things we can see.

But dystonia is a neurological movement disorder involving the brain and nervous system and the signals that control movement.

That distinction matters.

The more we understand about what is happening inside the brain, the closer researchers can get to better treatments and, ultimately, what families affected by dystonia are waiting for:

A cure.

During Dystonia Awareness Month, Tyler’s Hope is committed to helping more people understand the disorder while supporting the research working to change its future.

🧡 Dystonia doesn’t stop. Neither will we.

Learn more. Get involved. Give hope.
tylershope.org

Address

13301 US Highway 441
Alachua, FL
32615

Website

http://www.tylershope.org/

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