DIPG/DIPT Discussion

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A searchable blog on DIPG research, DIPG news, recent publications, DIPG Foundations, DIPG researchers, clinical trials as well as other issues relating to Diffuse Intrinsic Pontine Tumors- both Diffuse Intrinsic Pontine Gliomas (DIPGs) and Atypical Pontine Lesions (APLs).

For parents, family and friends of children with DIPG looking for information and connection to others dealing with DIPG please check the buttons on the right hand side for resources.

Sunday, March 3, 2013

Inspiring Kids- Calle and Hope for Caroline Inc

Five year old Caroline Cronk was just diagnosed with a DIPG in November 2012. Yet in that short time Caroline (fondly called Calle), her family and her friends have worked hard to shine as much of a spotlight on DIPG as possible.  Just yesterday, March 2, the Boston Globe updated there remarkable story.

Her story started as so many other kids have.   Calle started having fatigue- then balance issues.  A head tilt and squinting of the eyes were noticed.  Her face became paralyzed on a side.  A walnut sized mass was found in the pons.

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