A potential new target for treatment of diffuse intrinsic pontine glioma (DIPG).

There are some childhood cancers that have experienced few treatment advances in the past decades. The lack of effective treatment options can be a nightmare for patients and their families. The slow pace of translation for promising research from the laboratory to the clinic has created a “pre-clinical gap” meaning that basic scientific research is not reaching children in the clinic. There are some researchers that are seeking to be the bridge and accelerate the pace of the research and the initiation of clinical trials. The Children’s Cancer Therapy Development Institute is a unique independent non-profit organization focused on the ‘preclinical gap’ in childhood cancer research. Their mission is to bridge scientific discovery and the initiation of clinical trials.

One of the cancers that require urgently more research and treatment options is Diffuse intrinsic pontine glioma (DIPG), a rare and brutal tumor of the midbrain. Decades of clinical trials have shown that DIPG tumors are insensitive to traditional chemotherapy.

Dr. Noah Berlow, is a post-doctoral fellow at The Children’s Cancer Therapy Development Institute (cc-TDI, cc-TDI.org) that identified the IL13RA2 gene as a specific target for DIPG cells which is absent in normal brain cells. This discovery opens new avenues to attempt and treat DIPG. This study was recently published in PLOS ONE.

This project took its inspiration and it was done thanks to the support from The Lyla Nsouli Foundation For Children’s Brain Cancer Research and With Purpose, both projects founded by childhood cancer parents.

A strong reminder that as parents we CAN make a difference and find a cure for cancer if we join our forces.

To read more about it click here.

Some inspiration.

Sam a child diagnosed with Diffuse Intrinsic Pontine Glioma, he was not eligible for clinical trials because he was only 2 years old. Sam lost the battle against cancer, but his mom, Erin Benson, never gave up to make him happy. Inspired by the support of friends and family she founded With Purpose a youth-led movement dedicated to creating a world where kids with cancer have access to safe and effective treatment.

Recently she wrote a blog post “I’m the Executive Director of a Nonprofit… and a Waitress, the invisible cost of cancer”, where she shares a very delicate and not so openly talk aspect about going through childhood cancer: the financial aspect.

Everyday life struggle, effort, pain, and love, continue after we face a cancer battle of our relatives and loved ones and still we have to pay the bills.

We recommend you to read her blog post about courage, about standing up, about coping and resiliency, about being patient with yourself.

Whenever you feel desperate by not knowing what to do, follow her advice:

  • “What you do is hold your people close and love them.”

  • “What you do is find gratitude for what you have, knowing that nothing is permanent.”

  • “What you do is the best you can.”

 

We hope this can bring some inspiration to you.

Personalized medicine for brain tumors.

The Pacific Pediatric Neuro-Oncology Consortium (PNOC) is a network of more than 20 children’s hospitals that conduct clinical trials of new therapies for children with brain tumors with the mission to identify personalized treatment challenges.

PNOC was formed to provide children with brain tumors access to individual and personalized treatment based on the molecular biology and genetics of each tumor.

Participating hospitals include:

  1. Children’s Hospital Los Angeles (CHLA)
  2. The Children’s Hospital of Philadelphia (CHOP)
  3. Children’s National Medical Center (CNMC)
  4. Johns Hopkins Hospital
  5. Children’s Hospital & Research Center Oakland (CHRCO)
  6. Dana-Farber/Boston Children’s Cancer and Blood Disorders Center (DFCI)
  7. Nationwide Children’s Hospital (Nationwide)
  8.  Doernbecher Children’s Hospital Oregon Health & Science University (OHSU)
  9. Jude Children’s Research Hospital (St Jude)
  10. University of California, Los Angeles (UCLA)
  11. University of California, San Diego Rady Children’s Hospital(UCSD/Rady)
  12. University of California, San Francisco (UCSF)
  13. University of Utah(UTAH)
  14. Seattle Children’s Hospital (Seattle)
  15. Louis Children’s Hospital
  16. Texas Children’s Hospital
  17. University of Minnesota/Masonic Cancer Center
  18. UF Health Neuromedicine Hospital
  19. Ann & Robert H. Lurie Children’s Hospital of Chicago
  20. The Children’s Hospital of Philadelphia
  21. SickKids Hospital

PNOC is running clinical trials like nanoliposomal irinotecan and immunotherapy vaccine (H3.3K27M) for Diffuse Intrinsic Pontine Glioma, modified measles virus for recurrent medulloblastoma, Everolimus for recurrent or progressive low-grade gliomas, Vemurafenib for children with recurrent/ refractory BRAFV600E-mutant gliomas.

To find out if your child is eligible to enroll in a PNOC clinical trial you have to contact the closest participating site.