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Events

Connecting our community—
online and in person.

From global summits to virtual meetups, the TBRS Community brings families, caregivers, researchers, and clinicians together in meaningful ways. Our events are designed to educate, inspire, and build lasting connections.

Whether you’re joining us at a family conference, attending a research roundtable, or tuning into a webinar from home, we’re glad you’re here.

Upcoming Events

2026 TBRS Community Summit!

03/19/26 – 03/22/26

2026 TBRS Community Summit!

The 2026 TBRS Community Summit will bring our community back together in San Antonio, TX, USA.

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Past Events

1970-01-01

2024 TBRS Exercise Challenge

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New Family Meet-Ups -- Upcoming Dates!

2024-02-28

New Family Meet-Ups -- Upcoming Dates!

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Tin Roof BBQ Cornhole Tournament

2020-10-25

Tin Roof BBQ Cornhole Tournament

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2023 TBRS Exercise Challenge

2023-04-01

2023 TBRS Exercise Challenge

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2023-08-07

2023 TBRS Community Summit

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Costumes for a Cause

2018-03-16

Costumes for a Cause

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Colton's XXXtraordinarY Cause - TBRS Community as Honoree at 'A Rare Affair'

2018-09-22

Colton's XXXtraordinarY Cause - TBRS Community as Honoree at 'A Rare Affair'

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Stryker Strong 2019 Golf Tournament

2019-04-11

Stryker Strong 2019 Golf Tournament

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2018 TBRS Community USA Conference

2018-09-21

2018 TBRS Community USA Conference

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LaGrange, NY Walks for Autism Awareness!

2019-04-28

LaGrange, NY Walks for Autism Awareness!

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Clubine-Badowski 2019 Cornhole Tournament

2021-09-18

Clubine-Badowski 2019 Cornhole Tournament

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2019-10-18

2019 TBRS Community USA Conference

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Tin Roof BBQ 2020 Rare Disease Day Celebration

2020-02-29

Tin Roof BBQ 2020 Rare Disease Day Celebration

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TBRS Community Exercise Challenge

2020-04-01

TBRS Community Exercise Challenge

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2020 Super Bowl Square Fundraiser

2020-02-02

2020 Super Bowl Square Fundraiser

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Collaborative Research Network Conference

2020-11-12

Collaborative Research Network Conference

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2021 TBRS Community Family Conference

2021-09-24

2021 TBRS Community Family Conference

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Tin Roof BBQ Cornhole Tournament to benefit the TBRS Community

2021-09-12

Tin Roof BBQ Cornhole Tournament to benefit the TBRS Community

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2022-02-25

TBRS Scientific Advisory Committee

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Clubine-Badowski Family Cornhole Tournament - Benefitting the TBRS Community

2021-09-18

Clubine-Badowski Family Cornhole Tournament - Benefitting the TBRS Community

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2021-09-24

3rd Annual Stryker Strong Golf Tournament

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2022 TBRS Community Challenge

2022-03-01

2022 TBRS Community Challenge

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TBRS and Leukemia Risk: Discussion and question/answer session for families

2022-02-26

TBRS and Leukemia Risk: Discussion and question/answer session for families

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Coffee with Kate: Meet with Dr. Kate Tatton-Brown

2022-03-13

Coffee with Kate: Meet with Dr. Kate Tatton-Brown

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TBRS Family Meet-Up: For newly diagnosed families to meet and learn about TBRS

2022-07-06

TBRS Family Meet-Up: For newly diagnosed families to meet and learn about TBRS

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2022 TBRS Family Conference

2022-10-07

2022 TBRS Family Conference

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2022-09-20

TBRS Collaborative Research Network Conference, 2022

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2022-08-14

Kiernan Family Cornhole Tournament - Benefitting the TBRS Community

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2022-08-08

Nutritional Support for People Diagnosed with TBRS, Sarada Bernstein MPH, RD

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