FAQ

Q. what can we do to help?

A. Being here! Advocacy and awareness helps to propel research forward. By participating in the conversation of disability and educating people on TBCK- you are a part of that movement. Organizing and advocacy are what we consider the foundation’s main avenues towards increasing opportunities for research and potential treatment and intervention.

Q. Are there TBCK Events or fundraisers?

A. Continually check back on the site and on our Facebook to see if there are fundraising opportunities in your area. Want to host an event? Contact us, we would be thrilled to work with you!

Q. I am newly diagnosed and overwhelmed with what to do next. What do you suggest?

A. While there is no size-fits-all when it comes to rare diseases, we suggest visiting our About TBCK page for our initial suggestions. Our fact sheet is also designed to serve as a place to start when familiarizing your doctors, therapist, etc. with the disease. You may find that connecting with other families that have walked a similar path can be helpful.