Timothy Syndrome Foundation

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Timothy Syndrome Foundation

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Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Timothy Syndrome Foundation, Nonprofit Organization, Brigham City, UT.

Timothy Syndrome Foundation is a 501c3 tax exempt organization providing support and education as well as promoting awareness and research for individuals, families and the medical community affected by all forms of Timothy Syndrome and Long QT 8.

08/16/2026

Join us this Wednesday, August 19th at 8pm EST for an informational Q&A session about special needs education with Danielle Harrop, MS. Danielle earned a Master of Science in Curriculum and Instruction from Western Governors University and a Bachelor of Science in Severe Disabilities from Utah State University. She has seven years of experience teaching in both elementary and secondary Essential Elements classrooms, providing instruction and support for students with significant and diverse learning needs. Her work has focused on special education, inclusive practices, assistive technology, and creating meaningful learning opportunities for students with diverse needs. Come with questions and get ready for the upcoming school year with us!

Zoom link:
https://us02web.zoom.us/j/89761476655?pwd=pTtcUbLPZJMGOet3jxb7FPM0wAyN8e.1

06/01/2026

We are excited to welcome Halle Wilson as the newest member of the Timothy Syndrome Foundation! After meeting with Katherine Timothy and learning about the systemic and life-threatening conditions associated with CACNA1-C and TS, she reached out to try and help us and those with TS find help and community. She has worked with many different non-profit organizations, both as a volunteer and a researcher, and we are welcoming her on as our newest intern, where she will be working with our team to coordinate and organize communications between families and the foundation.

In her free time, you can find Halle going on hikes, weaving on her loom, or doing word puzzles (especially Bananagrams)!

Please join us in welcoming Halle Wilson to the team!

05/21/2026

Save the date! The 2026 international conference will be in Houston, Texas from November 13th-15th. More information to announced soon!

02/28/2026

❤️💙 Rare Disease Day 2026 💙❤️

Timothy Syndrome is rare.

But the fear is real.
The hospital stays are real.
The long nights watching monitors are real.
The strength of our families is very real.

Today isn’t about statistics.
Today is about the children who fight quietly.
The parents who become medical experts overnight.
The siblings who grow up faster than they should.

At the Timothy Syndrome Foundation, we don’t take “rare” lightly. We carry it with purpose.

We build partnerships because no one should navigate this alone.
We support one another because community matters — especially when the diagnosis feels isolating.

If you are part of this community — We See You
If you support this community — Thank You
If you are just learning about Timothy Syndrome today — Welcome

Rare doesn’t mean small. Rare means powerful.

02/02/2026

💖 February is Heart Month 💖

For families affected by Timothy Syndrome, the heart is never something we take for granted.

Timothy Syndrome is a rare genetic condition that places children at risk for life-threatening heart rhythm abnormalities. For our families, heart health isn’t just a topic for February—it’s part of everyday life.

This Heart Month, we honor the strength of our children, the resilience of parents and caregivers, and the medical professionals who walk alongside our community. We also recommit ourselves to supporting families with education, advocacy, and access to resources that can help protect the hearts we hold closest.

💚 Rare doesn’t mean invisible.
💚 Awareness saves lives.
💚 Every heartbeat matters.

Thank you for standing with the Timothy Syndrome community this Heart Month.

Address

Brigham City, UT
84302

Website

http://Timothysyndromefoundation.org/

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