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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.

Thursday, March 14, 2013

Dylan Warriors- a pivotal change for DIPG

The last two posts about the sonic hedgehog pathway have been quite medical.   When trying to decipher the medical terms it is easy to miss the amazing lengths families have gone to try to make a difference in the course of DIPG.   In this instance, we actually know a specific child and family that started it all- the Jewett family.  This is a remarkable story of a family and a researcher joining forces to completely change the world for DIPG.  Through the donation of Dylan's tumor to Stanford the entire landscape for DIPG research has changed.

The thinking has changed from "it isn't possible" to "it is possible"!
*It is possible that parents will want to donate tumor after their child has died.
*It is possible that we can grow cell lines and make animal models from this donated tissue.
*It is possible from that information we can chose new ways to try to fight DIPG.
*It is possible for families, foundations and researchers to come together to make a difference.

Thank you Jewett family, Dylan's Warriors, Michelle Monje and the doctors at Stanford.

Note:  We now not only do we have that one cell line but more than 30 others DIPG cell lines!

Please watch their story at-
https://www.youtube.com/watch?v=pdFfWhQ9964

References:
Dylan's Warriors- http://curedipg5.com/ or www.facebook.com/CureDIPG

Dylan's Story- http://www.kidsvcancer.org/tissue-donation/information-for-families/donation-stories/dylan/

DIPG Preclinical Consortium-
http://pptiohsu.blogspot.com/2011/12/open-science-forum-dipg-preclinical.html

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