DIPG/DIPT Discussion

brought to you by

Just One More Day for Love, Hope & a Cure

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.

Saturday, March 9, 2013

DIPG Foundation Spotlight- Team Julian Foundation

DIPG Foundation Spotlight is a new series of posts intended to highlight the work of so many parent lead foundations that are creating awareness, supportting other families, funding research as well as other developing other endeavors to better the lives of other kids and their families.

Team Julian Foundation- In Support of a Little Super Hero
The exceptional, imaginative, dark-haired 4-year-old sounded like every parent's dream.   He was a soccer player, a lover of books and music, a social little being that could make people laugh, and a fighter of bad guys.  On November 29, 2010, this family's world was turned upside down when that Monday morning he woke up disoriented.  In a Detroit ER, Julian was diagnosed with a brain tumor that was later classified an atypical brainstem glioma.  He was eventually airlifted to St Jude and began radiation on December 23,  2010.

Unfortunately his post radiation scans in February 2011 showed spread through the brain and lower spine.   Julian endured more radiation and returned to Michigan for chemotherapy.  The tumor was relentless.  Only seven months after diagnosis the little superhero died.

His family and friends were inspired by Julian's charm and courage.    They became "fiercely determined to keep his spirit alive by helping other kids and their families get a fighting chance against this devastating disease."Team Julian Foundation came into being.

As always pictures are worth a thousand words.  Here is an eight minute video about Julian and the foundation......

In two years they have raised 200K which has gone to support DIPG research as well as other things.   There has been 130K to research at St Jude Research Hospital, Keller Lab at OHSU(primary coordinator for the DIPG Preclinical Consortium) and the DIPG Collaborative.   They have also supported Make A Wish and the distribution of the ACCO book on Understanding the DIPG Journey.

At the very end of the video, there was  a hint of what will come in 2013.   It looks like the foundation will become Julian B Bovins Courage for Cures Foundation.    Looking forward to finding out more about the developments with this organization.

Team Julian Foundation-