Resources

This page is definitely still “under construction” in building this resource list, but here are a few resources we hope provide a little bit of a start.

Our hope is to be able to provide more and more resources for those who are looking for information about brain cancer. The Internet provides an overwhelming amount of information and sometimes it’s hard to know even where to start looking. We’d definitely recommend reaching out to your networks – it’s crazy, as soon as you ask, so many people have gone through or know someone close who’s gone through something like this and can offer such great insight. There is a Facebook group for those families going through ATRT. If you’re interested in connecting with other families to ask about resources, experiences, support, and more, please email us at sunsoutkaisout at gmail.com.

Information about Childhood Cancers and Brain Cancer

• St. Baldrick’s Foundation – A foundation focused on childhood cancers and raising funds to support research and those affected by childhood cancers.
• Alex’s Lemonade Stand – focused on finding a cure to eradicate childhood cancers.
• American Cancer Society
• American Brain Tumor Association
• National Brain Tumor Society
• Pediatric Brain Tumor Foundation

Information about ATRT

• Cancer.gov – summary sheet on ATRT
• American Brain Tumor Association

Cancer Hospitals and Research Institutes

Many, many hospitals provide cancer treatment for brain cancer and the great thing is more and more hospitals are getting better at cancer treatment. The institutes listed below are identified because of they were referred to us as leading institutes that had treated patients with ATRT and/or with treating cancer for many years (including all different types).

ATRT is rare and there is currently no “standard protocol” for treating this cancer. Patients receive the treatment based on the best knowledge out there, but clinical trials for new treatments may be another option to consider, especially in pediatric cases. According to the Children’s Oncology Group, while less than 5% of adults undergoing cancer treatment are enrolled in a clinical trial, 60% of patients under the age of 29 are undergoing treatment through a clinical trial.

These institutes have had clinical trials for ATRT as well. We can’t guarantee any clinical trials are currently open at these sites, but it’s a great place to start to look.

• Dana Farber Cancer Institute
  • This link will take you to the information page about ATRT at the Dana Farber Center.
• St. Jude’s Children’s Hospital
  • This link will take you to St. Jude’s information page on ATRT.
• MD Anderson’s Children’s Cancer Hospital
  • This links takes you to the MD Anderson Childhood Brain Cancer treatment page.
• Clinical Trials.gov
  • This site is the Federal government’s listing of the different clinical trials they have currently in their database. You can search by keyword. It may be somewhat confusing, but if you find anything of interest, definitely bring this to your doctor to discuss.
• Children’s Oncology Group
  • This clinical trials group offers a great deal of information about what clinical trials are (focused on adolescent and childhood cancer research). This page will take you to learning more about clinical trials and help you locate open clinical trials.