End DYT1 dystonia. For Tyler. For every child.
Tyler’s Hope is a 501(c)(3) foundation funding the research, education, and awareness that will end DYT1 dystonia — for the families living with it today, and the ones who will hear the diagnosis tomorrow.
2006
Founded to fight DYT1 dystonia
1 in 3
People with dystonia are children
2
Centers of Excellence funded
100%
Mission-driven 501(c)(3)
Bring hope and a cure within reach.
Founded in 2006, Tyler’s Hope for a Dystonia Cure is dedicated to raising awareness, advancing research, and accelerating the discovery of a cure for DYT1 dystonia.
We’re committed to ensuring no other child endures the same journey to a diagnosis that Tyler and Samantha faced. Through advocacy, education, and research, we work to bring hope to every family affected by this disease.
Three pillars. One mission.
Every dollar Tyler’s Hope raises goes toward one of three fronts in the fight to end DYT1 dystonia.
Research
We fund the science that brings a cure within reach — at Centers of Excellence at Duke and the University of Florida’s Norman Fixel Institute, and through collaborations across the dystonia research community.
Explore the Research →Education
We help families navigating diagnosis and care, and we help medical professionals recognize dystonia faster — because every wasted year of misdiagnosis is a year a child spends without the right support.
About Dystonia →Awareness
We tell the story of dystonia loudly and consistently — so families know they’re not alone, doctors recognize the signs, and donors understand why this fight is worth funding.
See Our Coverage →
A family. A diagnosis. A movement.
Tyler and Samantha’s diagnosis with DYT1 dystonia changed our family forever — and started a foundation determined to make sure no other family has to fight this disease alone.
What started as a family’s hope is now a movement: a 501(c)(3) foundation funding the research, the education, and the awareness that will see this through to a cure.
“Tyler’s Hope is committed to ensuring that no other child endures the same challenges that Tyler and Samantha faced on their journey to a diagnosis.”
Find your way in.
Whether it’s a one-time gift, a legacy commitment, or simply showing up — there’s a way for you to be part of what’s next.
Donate Online
The fastest way to fund research today. Make a one-time or recurring gift through our giving partner.
Donate Now →Benefactor Society
Lead the fight at $10,000+ and join the donors powering the mission’s biggest moves.
Learn More →Planned Giving
A bequest, IRA charitable rollover, or charitable trust can extend your generosity into a lasting legacy.
Explore Options →Give by Mail
Prefer to send a check? Here’s the address, payee name, and everything else you need.
How to Mail a Gift →Join us in person.
Tyler’s Hope events are where this community gets loud, connects in person, and turns generosity into a movement. Hope to see you at one.
The Hope Weekend
Tyler’s Hope’s signature gathering — three days of community, fundraising, and a celebration of the people who fuel the mission.
Event Details →Season of Hope
An end-of-year campaign of giving, gratitude, and reflection — bringing the year of progress home.
Event Details →Bourbon at the Barn
A spirited evening at the barn — bourbon tasting, live music, and great company in support of dystonia research.
Event Details →From the family.
Updates from the Tyler’s Hope team and the family that started it all.
February 4, 2025 · Diary
They Do Not Complain
An update on Tyler, Samantha, and Luke — the strength they bring to every day, and the road they’re walking.
Read More →
January 10, 2023 · Diary
New Year with Family
Tyler, home with Michelle and Luke as a new chapter begins — a quiet update on the family at the heart of the mission.
Read More →
January 11, 2021 · Diary
Ringing in the New Year
Tyler continues the search for treatments and the work of helping others — even as dystonia tests the family every day.
Read More →Help us end DYT1 dystonia.
Every gift, every conversation, every share gets us closer. Be part of the mission today.