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.

Friday, May 3, 2013

DIPG Collaborative

The DIPG Collaborative "is an association of foundations unified with the mission of efficiently funding and inspiring DIPG research in hopes of finding a wider cure for cancer".   From The Cure Starts now website it says that the Collaborative Council is to:
1) provide the tools and information to families whose children face the difficult diagnosis of pediatric brain cancer.
2) provide a warm and caring envirnoment to share information, discuss options and support one another.
3) make available accurate and easy to understand information for families that are newly diagnosed.  

A major kick off of the DIPG Collaborative was the 2011symposium that brought 13 foundations together with researcher to find substantive ways to research DIPG jointly together.    From that meeting several research infrastructure developments occurred which now really allows us to start to unravel DIPG.   These included the DIPG Preclinical Consortium, the DIPG Resgistry and the DIPG Genomics Repository.

If one hasn't looked at the Preclinical Consortium,  I think it is worth the time as it is impressive.  It is less than 4 years from when the first cell line was promulgated in Michelle Monje's lab (from tissue donated by Dylan Jewett).  Through the consoritum we now have ten institutions working together on more than 30 cell lines (as well as various animal models) trying to find the best single agents or combinations in those cell lines to be a  basis for rapid translation into clinical trials.   Every week there is an update on the consortiums work including DNA and RNA analysis. This is fully funded byt the Foundational Leadership Partnters of the DIPG Colaborative.

The DIPG Registry is equally impressive.  There is a section for medical professionals including sections on enrollment information and consultations.   There is also a section for parents where one can make contact for second opinions and also search for open clinical trials.  Parents can make contact with the registry to discuss enrollment- even for children who have died.  There already is some specific research in the works.

The DIPG Collaborative Symposium starts today, however, the major work of the DIPG Collaborative for foundations starts tomorrow.   The first session is on objectives for the next two years.   It would be really interesting to see the direction this collaborative is moving.

There are three levels of support:
Foundational Leadership Partners - The Cure Starts Now, The Cure Starts Now Australia, Jeffrey Thomas Hayden Foundation, Hope for Caroline, Soar with Grace, Reflections of Grace Foundation, The Lyla Nsouli Foundation

Foundation Partners- Smiles for Sophie Forever, Benny World,  The Team Julian Foundation

Symposium Sponsors- Max Lacewell Foundation, Love Chloe Foundation, Caroline's Miracle Foundation, Ellie DIPG Research Fund,  American Childhood Cancer Organization,  Pray Hope Believe Foundation, National Brain Tumor Society, Lurie Children's Hospital of Chicago, Cincinnati Children's Hospital

CSN DIPG Collaborative Council

DIPG Collaborative