RESOURCES for DIPG:
Public Group Discussion for DIPG Families Online: Facebook https://www.facebook.com/groups/DIPGfamilies/
The DIPG Network: www.dipg.net (a forum for families of those diagnosed with DIPG, with group support, information about the latest clinical trials, a foundational directory, and more)
The American Childhood Cancer Organization: 2012 Handbook for families with a DIPG diagnosis, “Understanding the Journey, A Parent’s Guide to DIPG”: http://www.acco.org/Information/Resources/Books.aspx
Pediatric Brain Tumor Foundation The largest contributor to pediatric brain tumor research to date in raising funds. (working hard for brain tumor research in the United States, and supporting families afflicted with a pediatric brain tumor) www.pbtfus.org
American Brain Tumor Foundation (for adults and children, families afflicted with a brain tumor, supporting research, one of the best statistical resources) www.abtf.org
Reflections of Grace Foundation gives financial support to families afflicted with DIPG, and has been an invaluable support to many DIPG familes. Reflections of Grace is a member of the DIPG Collaborative in support of the DIPG Registry. www.reflectionsofgrace.org
The Cure Starts Now Foundation Cininnati, OH –A foundation specific to DIPG, most instrumental in the creation of ‘The DIPG Collaborative, has acted as a channel for the Collaborative funds and agenda as well as working hard to raise funds for DIPG Clincal Trials. In 2013 they raised some $2,000,000 for research, and are on target for raising as much in 2014; they campaign very successfully for high-profile support. The DIPG Collaborative’s main objective is to support the creation of the DIPG Registry, and international registry of data for DIPG at Cincinnati Children’s Hospital. If you are looking to support the latest in DIPG research, The Cure Starts Now would like your support, and is a very proactive new institution for DIPG( www.thecurestartsnow.org) You can give to the Cure Starts Now in Jack’s honor below, or a number of many children on their “Our Heroes” page.
For those in California:
(pediatric brain tumor network) http://www.wecan.cc Offering support to children and families of children with a brain tumor.
Support for bereaved children and their families in Los Angeles County, http://www.justintimechildrenshouse.org
The Cure Starts Now California Chapter Jackson, CA
Fighting for research for pediatric brain cancer first. Contact person: Jackie Harrison, tel: 209.295.1964 http://chapters.thecurestartsnow.org/california_2014/