Thank You for Supporting Us!

We at CSAW  hope you and your families are well and safe.  There is so much turmoil in our world with this pandemic, we are grateful for social media that allows our community to stay connected and share stories and practices we’ve used to make sure our kiddos don’t fall behind – and that we all stay sane!

Many in the non-profit world are worried about what will happen in the wake of Covid-19. The good news is CSAW will survive. We have continued to receive donations the last few weeks and are very grateful. But people are rightly concerned about finances and the advisability of giving right now.

To address those concerns, the Giving Tuesday foundation has announced an extra “GivingTuesdayNow” campaign for this year, beginning May 5th, as an addition to the traditional post-Thanksgiving “GivingTuesday”. We know that some of you may have been laid off, taken ill yourself, or are caring for friends and relatives who are ill, on top of the additional responsibilities of caring for your CTNNB1 child. We want to respect your ability to give right now, so here are some suggestions for maximizing your generosity in ways that fit your personal situation. All contributions will be put towards our mission to create awareness of CTNNB1 Syndrome; to provide information about symptoms, diagnosis, treatments and therapies; and to connect affected families.

·       A CSAW supporter has committed to match up to $1,000 for donations received beginning May 5th. To participate, create a Facebook fundraiser, with donations designated to CTNNB1 Syndrome Awareness Worldwide. Each donation made will count toward the matching grant. To make sure you are credited for donations made on your fundraiser, please send an email to our Executive Director at when your fundraiser receives a donation. Even more fun, the first 50 contributors will receive two of our very cool car magnets!

·       With so many of us shopping online these days, AmazonSmile is a great way to support CSAW. Just go to to sign up and select CTNNB1 Syndrome Awareness Worldwide as your charity. Then, when you shop at, Amazon will donate 0.5% of your eligible purchases to CSAW.  It seems like a small amount, but it adds up!

·       You can purchase CSAW merchandise with our beautiful dragonfly logo on our website. There are totes, tees, onesies, hats, mugs, and more! CSAW receives a portion of all proceeds.

·       According to Forbes, the CARES Act provides several new ways for taxpayers to give to charities. For individual donors who itemize, there is now no limit to the deductions they can take for charitable contributions in 2020. For donors who don’t itemize, they still can take a deduction for up to $300 in charitable contributions. As always, check with your accountant or tax advisor, but this seems like an easy and affordable way to help.

Thank you to our wonderful families – and stay safe and healthy!

Your CSAW Board

Do you remember what it was like to get the diagnosis of CTNNB1 Syndrome?  You frantically searched the Internet for some information about CTNNB1 Syndrome, but could only find a few scientific studies.  You wondered how you were going to help your child achieve the life that you had dreamed of for him or her.  This was something that each of us at CTNNB1 Syndrome Awareness Worldwide experienced, and it is the driving force behind our creation of


We are registered as a 501(c)3 charity in Ohio, USA as CTNNB1 Syndrome Awareness Worldwide. Our goal is to be 100% transparent to our donors about how their money is being spent.   We are currently rated as a Guidestar Platinum charity, the highest possible rating for transparency, and your assurance of our commitment to using your donation wisely.


You can donate to CSAW via Facebook at, The PayPal Giving Fund, Guidestar, and PayPal Donate are linked below.  You can also help us while you shop on Amazon by finding us on using the link below.  You can also send checks in snail mail to CTNNB1 Syndrome Awareness Worldwide, 6077 Far Hills Ave #150, Dayton, OH 45459.


Thanks for all you do to support us!

The first facebook link requires acceptance to the family facebook page.  

Site © 2017-2020 by CTNNB1 Syndrome Awareness Worldwide (CSAW).  The information contained in this site should not be construed as a substitute for personal medical advice. Please consult with a qualified clinician in all matters relating to genetic diagnosis, management and health.