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Be the first to hear about upcoming events and TUBB3 news.
Join our family Facebook group for support and information from other families affected by TUBB3. It is a great place to share stories, learn from the experience of others, get advice, and connect with others who are going through a similar situation. You can also follow our public pages on Facebook and Instagram for information and updates, and see events and slideshows on our YouTube channel.
Come join other families and individuals with TUBB3 to connect and ask questions. Our First Quarterly Catch Up will be November 30th, at 7:00 PM Central Time. We will be discussing ideas on tackling the Holiday Hurdles of TUBB3 and connecting with others! We hope you can join us!
Join us at our 3rd Annual TUBB3 Family conference! This is a great chance to meet other families, get good information, and have fun!
More information and registration coming soon!
To give you an idea of what you'll experience, here's our video from last year's conference.
We appreciate all you do to help support the TUBB3 community!
Are you or a family member diagnosed with TUBB3? You can help spread awareness and bring understanding to others by sharing your story.
We would love to feature you next!
Your donations make this foundation possible! Contributions also go towards family support and connections, including our annual TUBB3 conferences. We appreciate you!
We have shirts, hoodies, tote bags, mugs, and masks! A portion of proceeds come back to us to support you and the foundation.
Because the TUBB3 gene is located on the 16th chromosome, we celebrate TUBB3 Awareness Day on 3/16. Every year on March 16th, there are TUBB3 families all over the world who are sharing their stories and raising awareness of this ultra-rare syndrome. You can help by sending us a photo of your TUBB3 individual for our video that we make every year. Then, on March 16th, share our video with all your friends and family!
Awareness Day Video 2023