CONNECT WITH COMMUNITY
“Attending events and getting involved isn't just an opportunity to learn and grow, it's a chance to be part of a community of support that is dedicated to advancing research and families in their journey with TBCK Syndrome.”
Upcoming EventS
TBCK
Community
Conference 2024
Hosted in San Juan, Puerto Rico, join us November 8-10, 2024. (Details on our conference page!)
Ask a
Scientist (Monthly)
Follow along on Facebook/Instagram for upcoming events!
TBCK Community Calls (MONTHLY)
Follow along on Facebook/Instagram for upcoming dates!
"Gatherings foster understanding, inspire advocacy, and provide a platform for families and individuals to connect on a profound level. Together, we can drive progress, raise awareness, and create a brighter future for everyone affected by TBCK Syndrome.”
fall 2024 TBCK Conference
Past Events
2023
2022
TBCK Weekend: Conference + Family Gathering
2021
Million Dollar Bike Ride Virtual Event
2020
The 1st Annual TBCK Syndrome Awareness Day
Race For Rare Kids on Lake Michigan
Virtual Viewing Party: “Multi-colored Zebra: Theo’s Story”
2019
First Biennial TBCK Conference for Clinicians, Researchers, and Families
"Imagine the power of a color, the strength of a shirt. They're not just pieces of teal fabric, they're beacons of awareness. For TBCK Awareness Day, teal is a color that unites and strengthens families living with TBCK Syndrome. Wearing a specific color or donning a unique tee is more than a statement, it's a conversation starter for rare diseases, epilepsy, and those with disabilities. These moments of recognition are a vibrant celebration of our TBCK community.”
Key Dates
Like many diseases, there is a spectrum of the conditions and severity of impact of TBCK Syndrome. In general, the major conditions are hypotonia (low muscle tone), epilepsy, vision impairment, and intellectual disability. As the disease is still so new, and so rare, much more research is needed to deepen understanding of TBCK syndrome.
Rare Disease Day
1 in 20 people will face a rare disease, often with no cure, and many undiagnosed.
Occurs during the last week
of February every year.
Next Upcoming Date:
February 29, 2024
Rare Disease Day sparks understanding
in the public and rallies researchers and decision makers to champion those living
with rare conditions.
Epilepsy Awareness Month
Occurs throughout the
month of November every year.
Next Upcoming Date:
November 1-30, 2023
Deck out in purple and keep an
eye out for events near you.
"In the special needs community, I've found nothing but empathy, support, and genuine interest in TBCK. We need to raise more awareness."
- Julie Ferry, grandmother and advocate to TBCK Warrior, Sophia
Let's paint the world with
awareness, one color at a time!
Annual Dates of Importance for TBCK
TBCK Syndrome Awareness Day
Wear teal in solidarity!
February 1st
Rare Disease Day
Show your support in green, blue, purple, and pink!
February 29th
Epilepsy Awareness Day
Deck out in purple!
March 26th
Epilepsy Awareness Month
Don lavender with your community!
November
Want to Host a Benefit Event for TBCK?
STAY
INFORMED
Epilepsy Awareness
The range of symptoms and conditions of TBCK Syndrome vary by each person. Notably, epilepsy is one of them. Not all families are impacted, but those that are affected can attest to the severity and intensity an epilepsy diagnosis brings. See below for links to CURE (Citizens United for Researching Epilepsy) and for the TBCK-related ID Syndrome page on the Epilepsy Foundation website.
The TBCK Foundation is a registered 501(c)(3) charity organization. Please note that we provide this information for the benefit of TBCK syndrome community. We are not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on individualized medical advising from qualified health care professionals before seeking any information related to their particular diagnosis, cure, or treatment of a condition or disorder. The TBCK Foundation is recognized as a 501(c)3 non-profit corporation. EIN 83-3095299.
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