Category: DIPG News

Jordan Malave Earns His Wings After Long Battle With DIPG

With great sadness, the Cristian Rivera Foundation announced that Heaven gained another DIPG Angel on Thursday November 17. Jordan Malave passed away at 6:30 on Thursday morning, bringing to an end his three-year battle with DIPG. He fought for an exceptionally long time and showed incredible bravery and strength in the face of this terrible disease. Cristian Rivera Foundation founder John “Gungie” Rivera had become close to Jordan and his parents, Leeana Castro and Jayson Malave, and even saw Jordan after his kindergarten graduation this past June. Jordan reminded John very much of Cristian, and watching him suffer was like living through Cristian’s illness all over again. John and the entire Cristian Rivera Foundation extend their sincerest condolences to Jordan’s family as they are once again reminded how horrible DIPG is and why it needs to be cured within our lifetime.

Support the National Childhood Brain Tumor Prevention Act

Dear Pediatric Cancer family or family friend,

WE NEED YOUR HELP. The National Childhood Brain Tumor Prevention Act is currently working its way through Congress. If passed, this Act would allocate $25 million a year for five years for the FIRST comprehensive research into the causes of brain tumors in children, including genetics, nutrition, the environment, and more. It will give us answers about better treatments and even prevention. To get this legislation passed we need your help. If families affected by childhood brain tumors—and all those who know them, love them, and understand what they go through–could write a letter, an e-mail, or make a phone call to their federal representatives, the future of our country’s children would be brighter. As stated by world renowned neurosurgeon Dr. Patrick Kelly, “once [a child] is diagnosed with brain cancer, it’s too late.”

  • Thousands of kids are diagnosed with a brain tumor each year and more than 40% of them die.
  • The average age of a child that dies from a brain tumor is 4.
  • More than 60% of those that survive face life-long complications and side effects.

That’s why we’re asking you to contact your Congressperson and Senators to let them know that you want to see this Act made into law. For more information and quick outlines to write a letter or e-mail, or make a call, visit www.mirasmovement.org/CBTPNA.html. For further assistance or if you have questions, e-mail cbtpna@mirasmovement.org or call (607) 319-4804. Thank you for helping us change the future for children with brain tumors!

September is Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month, a time to reflect on all the young lives that have been taken by all different kinds of cancer, including Pontine Glioma. In the same way that breast cancer is associated with pink and AIDS is associated with red, the color that signifies Childhood Cancer Awareness Month is gold. So be sure to wear a gold ribbon to show your support for children and families dealing with cancer, as well as those whose loved ones have been lost. You can also take the opportunity to support Pontine Glioma research through the Cristian Rivera Foundation by clicking the “Shop” tab and purchasing a wristband or t-shirt.