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Move the Needle - working for a cure

Our Visit to TGen

 

On Tuesday July 17 2018 we traveled to Phoenix Arizona to meet with Tgen (Translational Genomics Research Institute). TGen is the research facility where we elected to donate Camron’s tumor to further research on DIPG. Dr. Mike Berens and his team of researchers met with us to discuss Camron’s tumor findings as well as the current research they are working on in respect to DIPG.

 

The research teams shared with us the results of their findings regarding Camron’s tumor donation.  They identified that Camron had 48 Protein Coding Mutations, 12 Focal Copy Mutations, and 2 Gene Fusions.  The 2 significant Gene Fusions they focused on in our meeting were H3F3A K27M and TP53 R175H. The Gene Fusion H3F3A K27M is found in 70% of all DIPG tumors.  The Gene Fusion TP53 R17H is found in 42% of all pediatric high-grade gliomas.  Research is ongoing to understand how these mutations contribute to DIPG and identify a therapeutic strategy to target the mutated genes, H3F3A and TP53.

 

With the advancements in technology and tumor donations, scientist are becoming better equipped to understand the molecular makeup of DIPG revealing more clues that will lead to better treatments.

 

We met with a team of doctors and discussed Car T cell immunotherapy, testing efficiency of 2 new drugs, and liquid biopsy just to name a few.  The $25,000 contribution from The Team Cozzi Foundation will help further these topics of research.

 

Camron’s tumor is currently in stages of growth in hopes to contribute to further research.  While there is no known cure for DIPG, we learned that the choices made in Camron’s treatment helped to extend his life from 2 months to 27 months. 

 

We are excited and enthusiastic about our contributions and teamwork with TGen.  Together with the other DIPG / TGen families we are confident in moving the needle to find a cure.  As Camron said “So that no other kids are taken away from their families.”

To access TGen’s DIPG tissue donation portal, please go to: https://www.tgen.org/research-forms/hdn/dipg-research/

 

For more information about TGen’s DIPG efforts, please go to: https://www.tgen.org/campaign/move-the-needle-against-dipg/ and https://www.tgen.org/patients/participate-in-our-research/diffuse-intrinsic-pontine-glioma/