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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.
Join us at our 2nd Annual TUBB3 Family conference! This is a great chance to meet other families, get good information, and have fun!
July 19th we will have an informal conference with guest speakers. Breakfast and Dinner will be provided. Itinerary coming soon! TUBB3 Foundation does have a discounted block of rooms available. We will supply the link and contact info for the hotel to the email address you register with for you to book your room for the event.
*Block rooms reserved with a 2 night minimum. Room rates are $135 a night plus tax for up to 4 people per room. Each additional person per room is $50 per person. There is a fee to register of $25 per individual, or $50 per family due upon receipt. Please only register if you intend on going. If you have questions, please contact us.
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