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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 28, 2013

Foundation Spotlight- Stichting Semmy

The Netherlands- a small country with a big impact in the world of DIPG.

  • In Pub Med there are four articles from the Netherlands in just over a year!  
  • The Netherlands participants in the DIPG Preclincal Consortium being represented by Dannis G van Vuurden, and Esther Hulleman from VU Cancer Center Amsterdam.   They are currently listing two DIPG cell lines (VUMC-DIPG-B, VU-10170) in the Consortium. 
  • Amsterdam has been the site of two European DIPG meetings.  

How is it that a country with approximately 15-18 children a year diagnosed with DIPG is doing so much?  On the other side of the Atlantic, it is difficult for me to say for sure; but, I think it is in large part because of a parent-led foundation, Stichting Semmy.

Stichting Semmy is a story like so many other pediatric glioma foundation- started in memory of a precious child.  The  blond haired, 4-year old boy was diagnosed on July 20, 2006.  Radiation and steroids gave him and his family a "honeymoon time" going to Turkey and back to school.  The tumor came back with rapid progression in February 2007.  The hope was to get a new trial with convection enhanced delivery but the research wasn't ready.  Semmy died in his parents' arms on June 22, 2007.

Since then Semmy's parents, John Emmerik and Nicole Bakker, have joined together with some dedicated physicians and researchers  to completely change the approach to DIPG.  Their interests have been deep and wide- awareness, basic science research and clinical research. Many of the achievements listed above can be traced back to support from Stichting Semmy.

Of particular note in the story is IBM.   Stichting Semmy received an IBM Catalyst Grant to assist in funding a central research collaboration cloud for data exchange on DIPG as part of IBM's Smarter Healthcare Strategy.   Given that so few children are diagnosed at any one instittution, being able to exchange data in an efficient and intelligent manner is going to be key.    John Emmerik, Semmy's father, is IBM Netherlands software sales manager.

Stichting Semmy Website- http://www.pontineglioma.com/
Stiching Semmy Facebook- http://www.facebook.com/pages/Stichting-Semmy/228285370605509

Stichting Semmy In the News-

Amsterdam Meetings-
(2011) http://www.fondoaliciapueyo.org/images/docanexos/Amsterdam_2011.pdf
(2013) http://www.knaw.nl/Pages/DEF/33/849.html

Pre-Clinical Consortium