FAQ
If you would like to run your own event or just set up a separate customized donation page, we can help! We will create an event or campaign page and you can share this link with others. This page can include images and details about your campaign. Learn more
Check out our Support Page where you will find many ideas, resources, and links! We try to keep this as up to date as possible, adding new information as it becomes available to us.
You can also follow our weekly Support Sunday posts for more ideas.
Absolutely! If you would like to help us, please get in touch through our contact page
Definitely! We would be thrilled for you to support us by raising funds and/or awareness. Please contact us and we will get back to you to see how we can help.
You can contact Dr. Huang through the Rare Brain Tumor Consortium (RBTC) website. SickKids Hospital in Toronto also offers an International Patient Program through which parents could get information and advice.
Firstly, it means that your child’s name and clinical data (demographics, history, diagnosis, treatment, and outcomes) will be documented in a central registry.
Secondly, you can donate your child’s biological material for analysis and research. This includes tumour tissue, cerebrospinal fluid, and blood. Blood from other family members can also be collected, so that researchers can explore whether there is a genetic basis.
Please see our RBTC information page for more details.
Registering your child during their active treatment stage might be helpful in terms of directing you to the best treatment options available. In addition, if your child’s data and biological materials are centrally deposited, it allows researchers to learn from them, and this can help change the outcome for other children.
No! You can donate your child’s data at any point in the process. As Dr. Huang explains, “We can learn from every single child, whatever the outcome was for that child. Every child can help inform us about how to approach the next child.” So whether your child is currently in treatment, post-treatment, or even if your child did not survive, please consider donating.