CTNNB1 Syndrome Awareness Worldwide

CTNNB1 Syndrome refers to complications resulting from either a mutation or deletion of the CTNNB1 gene.

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

ITS HERE! Our "Sibling Advocate Fill-In Design by Nadine" Shirt is now Available for purchase on Bonfire.

https://t.co/QyZ0K3mNkP

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

ITS HERE! Our "Sibling Love Design by Katy" Shirt is now Available for purchase on Bonfire.

https://t.co/IBUif6a9IW

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

Congratulations to Nadine, a CTNNB1 Sibling, and Katy, a CTNNB1 Aunt, our T-Shirt Contest Winners! We will have both shirt designs available for purchase on Bonfire this weekend.

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

Meet the Bushmans! Today they are sharing the their family's story at https://t.co/201T7uMLBP.

Interested in sharing your story? Send us a message!

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

Meet the Johnstons! Read their story on our latest Parent's Place Family Spotlight! https://t.co/8tmTXU5gWM

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

NEW POST ON PARENT'S PLACE!

Check it out here: https://t.co/cSQ20VkEJy

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

Thank you Wood children! For their birthdays, they joined together and raised money for CSAW on behalf of their older brother. Together, they raised $1080! Last week, they presented their check to the CSAW Executive Committee, who were elated to meet these thoughtful siblings.

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

Thank you all for your support on #GivingTuesday
If you are looking for other ways to support, please consider shopping with Amazon Smile, and set CSAW as your charity, or check our are gear on Bonfire: (https://t.co/v0H8P8mWBH)

[Effie Parks @OnceUponAGene]

Disability is Diversity. Help spread the message and wear it proudly. 🧬♿💙🦓 #raredisease #DisabilityTwitter #disabilityisdiversity #podcastforacause

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

NOW LIVE, CSAW's VIRTUAL PARENT LIBRARY:

https://t.co/KoHpaCo5NQ

Have you read a good book lately? Or connected to someone via their podcast? Share it with us by commenting below or by emailing Annie at [email protected] and we'll add it to our virtual parent libraries.

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

Happy Halloween! We love seeing how everyone is celebrating, especially Preston's 'Old Man' costume. Show us how you are celebrating below!

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

AMAZON PRIME DAY IS HERE! Today and tomorrow shop the Amazon deals with Amazon Smile! Add CSAW as your charity of choice, and Amazon Smile will donate a fraction of your sale to CSAW.

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

NEW POST on https://t.co/ErBEqyweeT's Parent Place! Vice President Annie shares https://t.co/FSJPkwsKU6 and tips to help prepare you for your child's IEP meetings. Check it out!

https://t.co/1Alv0oQUzD

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

SHOP & HELP CSAW

You can make a difference while you shop Amazon Prime Day deals on October 13 & 14. Simply shop at https://t.co/ykAGhmnuK2 or with AmazonSmile ON in the Amazon Shopping app and AmazonSmile donates to CTNNB1 Syndrome Awareness Worldwide.

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

UPDATE! We discovered an error in the initial Survery Result we posted. We have corrected this, and corrected version is now on our on our website: https://t.co/q12JflZeyx

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

We are launching Parent's Place, a resource on our website where families can find resources, connection, and support.

Check it out: https://t.co/AsledLNsvm

If you have questions about Parent's Place, or suggestions for future topics, please email [email protected]

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

If you haven't already, check out our survey results! It is offered as a resource to know what to expect upon diagnosis of a CTNNB1 syndrome diagnosis, some common symptoms, behaviors, and therapies that have proved effective for some, and more.

https://t.co/LtDle5AhXr

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

NOW LIVE! Many of your have taken our survey at https://t.co/h3f5lqx28b, now, with the help of volunteer Bruno Ramalho, we have compiled the survey results on our website: https://t.co/Tjrms65VUQ

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

Join today for our first ever CTNNB1 Syndrome Research Conference!

You can watch our YouTube livestream at:
https://t.co/INVTcUgV2Y

[CTNNB1 Syndrome Awareness Worldwide @ctnnb1org]

Turn your Father's Day shopping into a force for good. Shop at https://t.co/ykAGhmnuK2 and Amazon donates to CTNNB1 Syndrome Awareness Worldwide.