One mission I've had ever since Jacob was diagnosed with DIPG was to help other families. Even in the midst of our struggle, I envisioned a place families could go to get information on DIPG, connect with other families, and find the resources they needed to help them through their journey.
A year ago that place was brought to life...
Ever evolving, The DIPG Resource is a place with tons of resources for families of children diagnosed with DIPG and other cancers. From a printable medical binder to record doctor, treatment, and medical test information to printables for kids to fill out to tell their story (and for parents to keep and look at during the times when they are missing their child).
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The DIPG Mapping Project
What started as a way for families to connect with other families who lived close by, the DIPG Mapping Project has evolved into a way to see where the majority of children diagnosed with DIPG are located.
The DIPG Resource Database
A collaboration with Aimee's Army Foundation, the DIPG Resource Database is a survey that parents can take to help us better understand the connection among children diagnosed with DIPG. It also includes a survey for parents to share the treatments they have used. This data will eventually be shared on the DIPGResource.org so parents can make better decisions about the treatments they choose for their children.