I have a friend / family member whose child was diagnosed with a brain tumour. How can I help / support the child and family?
Check out our Support Page (add link) 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.
Does Tali’s Fund provide opportunities for student volunteers?
Absolutely! If you would like to help us, please get in touch through our contact page:
I’m a student and I would like to do a project or display at my school about Tali’s Fund. Can you provide me with some materials for my display?
Definitely! We would be thrilled for you to support us by raisings funds and/or awareness. Please contact us (link to contact page) and we will get back to you to see how we can help.
How can I get in touch with Dr. Annie Huang for advice about treatment for my child?
If you would like to learn more about the radiation sparing treatment method being used at SickKids, and whether it may be appropriate for your child, SickKids Hospital in Toronto offers an online International Patient Consult service (add link: https://www.sickkids.ca/en/care-services/international-patients/) through which parents could get information and advice. Note that in most cases international patients cannot be treated at SickKids, but you may be able to find a centre near you that also uses this method, or to take the information to your oncologist for review.
You could also contact Dr. Huang through the Rare Brain Tumor Consortium (RBTC) website
When you refer to “registering a child for the Rare Brain Tumor Consortium”, what exactly does this mean?
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 (link here) for more details.
Why register my child for the RBTC?
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.
Does my child have to be in active treatment to be registered with the RBTC?
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.