TUBA1A Foundation

08/17/2026

08/07/2026

We are excited to partner with the National Tubulinopathy Congress! They work with many different families that have a loved one with a Tubulinopathy. They are hosting a Family Webinar in October and are looking for a volunteer TUBA1A Family, that would like to share their story. If you are interested below is the contact information.

07/29/2026

We’re excited to continue growing our community and spreading awareness about TUBA1A-related disorders! 💙

Follow the TUBA1A Foundation on Instagram for:
✨ Educational resources
✨ Family stories and experiences
✨ Research updates
✨ Foundation news and events
✨ Ways to support our mission

📸 Follow us here:
https://www.instagram.com/tuba1afoundation?igsh=MWxpbnRxbHphdHBsOA==

Every follow, share, and interaction helps us reach more families, raise awareness, and support the TUBA1A community.

Thank you for being part of this journey with us! 💙

59 Followers, 10 Following, 3 Posts - See Instagram photos and videos from Tuba1a Foundation ()

07/25/2026

Awareness and information

07/10/2026

Here’s a Facebook post you could use:

🦓🩵NEW TUBA1A Foundation Baby & Sibling Onesies Are Here! 🩵🦓

Looking for a meaningful gift for a little one? Our adorable TUBA1A Foundation onesies are now available for just $15 each!

These sweet designs are perfect for:
✨ Babies diagnosed with TUBA1A
✨ Siblings who proudly support their brother or sister
✨ Cousins, friends, and family members who want to show their love
✨ Baby shower gifts for rare disease warriors

Every purchase helps spread awareness about TUBA1A and supports the work of the TUBA1A Foundation. A portion of every sale goes directly toward our mission of supporting families, raising awareness, and advancing research for children affected by TUBA1A. These can be purchased on the website at www.tuba1afoundation.com

🩵 Available in multiple colors and designs
🦓 Only $15 each
🎁 Makes a thoughtful and meaningful gift

As a small foundation, every purchase truly makes a difference. If you’re unable to purchase one, sharing this post would mean the world to us.

Together, we can help every child with TUBA1A know they are:

Strong. Brave. Loved.

🩵 🦓

06/26/2026

Today is Rare Chromosome Day, June 25th. We along with the Unique organization support this day! Our TUBA1A community is effected by a Rare Chromosome. We are all Unique because of this. Let’s Celebrate our community!

06/20/2026

We are so grateful for our community, for all of those that show their support and love! It takes a village to raise a TUBA1A child and we appreciate everyone that shares their love with our TUBA1A kiddos! We are excited to share our new shirt design for all of you that have been wanting one! If you love someone with TUBA1A, you’ll love wearing this shirt!

Simply go to the TUBA1A Foundation tuba1afoundation.org and click on shop.

Every purchase helps fund our Foundation so we can continue to provide a place for families to have support, resources and connections!

06/17/2026

We now have super cute shirts available on our website, tuba1afoundation.org

Show your love and support! D’Angelo and Dan loved showing off their shirts!

05/19/2026

We are so excited to announce that we have launched our website!
Please visit and share our website.
www.tuba1afoundation.org
This will be a place where we will share information, share our stories, share resources and gather information to connect with others! We hope that you all find it helpful!
If you would like to share your story on our website please reach out to us and we would be happy to feature your TUBA1A kiddo! If you would like to contribute to the Foundation in helping us with startup costs we would appreciate your donation and you just simply have to click the donation button on the website to do so. Remember this is a 501c3 non-profit, therefore all donations are tax deductible. We look forward to this new journey with you all!