MISSION
The mission of the Kids v Cancer Parent Council is to assist other families, oncologists, nurses, and researchers in saving the lives of children with cancer by providing information about Autopsy Brain Tissue Donation program for research and the Compassionate Use Navigator for obtaining not-yet-approved drugs.
BACKGROUND
Kids v Cancer has two programs that could help children with cancer, but some doctors and medical centers might not be aware of it.
Autopsy Brain Tissue Donation program:
Pediatric brain cancer research is not proceeding as fast as it could.  One of the barriers is the scarcity of autopsy tissue.  Researchers need brain tissue to study tumors and develop therapies to treat them.  Many families choose autopsy tissue donation as a way to take a final stand against their child’s cancer.
Compassionate Use Navigator program:
Compassionate use is a pathway for very sick kids to try new, promising drugs that have not yet been approved when other treatments do not work. Understanding the process and getting access to these experimental drugs is difficult and confusing for both physicians and families. The Kids v Cancer’s Compassionate Use Navigator program is an informational resource and personal assistance service for navigating the process of applying for not-yet-approved drugs.
WHAT CAN THE PARENT COUNCIL DO?
Think of ways to create awareness of these programs and brainstorm with other parents. What do you wish you or your child’s doctor would have known? A few suggested ideas are below:
- Help to build awareness. Can you find an appropriate contact person at your local hospitals: a nurse, a social worker, your kid’s doctor? Meet with this person, and let him/her know about these programs. Ask to implement these programs in the hospital. Stay in touch with this person, provide regular follow-up.
- Start a conversation. You can research existing and/or create your own, new Internet-based groups or chat rooms on brain tissue donation and compassionate use. Spread the word to other families via these internet groups/chat rooms.
- Provide literature handouts describing the programs to hospitals and families (We will make these for you).
- Spread the word via social media, parent email lists, disease groups, letters to the editor of your local newspapers, or by attending meetings.
- Involve your kids in the work of the Parent Council.
- Any other ideas? Share it with us!
Want to get involved? Email Jenn Flynn, Outreach Director, at Jenn@kidsvcancer.org.