What is remarkable is that they have not just focused there energy inward toward there family but have also started a new DIPG foundation- Hope for Caroline Inc. There are several upcoming fundraisers including a pancake breakfast next weekend and Calle's Miracle Run a month from now. However, they have already made their mark on DIPG research by contributing $100,000 on Feburary 8th to the Dana Farber lead research trial utilizing brain-stem biopsies "to trace signals driving the tumor and provide targeted treatments".
This trial has been funded by a coalition of private funds from various sources. Without these foundations helping to make a difference this trial very likely would not be possible.
This novel trial is hoped to completely transform our understanding of DIPG. The trial is listed to be currently open at 6 institutions in the US- Seattle Children's, Hopkins, Cook Children's in Texas, Lurie Children's in Chicago, Washington University in St. Louis and Dana Farber in Boston. There are several other collaborating institutions in this trial so there is hope that other hospitals will have this trial open in the future.
Best Wishes to Calle!
Best of hope to Hope for Caroline- keep up the great work!
Hope for Caroline, Inc http://hopeforcaroline.org/
Clinical Trial- Molecularly Determined Treatment of Diffuse Intrinsic Pontine Gliomas (DIPG) http://clinicaltrials.gov/ct2/show/NCT01182350?term=DIPG&rank=5
5-year-old Calle Cronk, her family fight rare illness http://www.bostonglobe.com/metro/2013/02/08/young-calle-cronk-and-her-family-face-unknowns-brain-tumor/dylgSGNkCmuVUHPTcB64zM/story.html
Story of sick Norwell girl goes national; social media attract support