A Santa Clarita Valley advocacy group travelled to Washington D.C. to ask for research funding to find a cure for Diffuse Intrinsic Pontine Glioma, a rare type of brain cancer.

Diffuse Intrinsic Pontine Glioma, often shortened to DIPG, is a malignant, diffusely infiltrating brain tumor, that claims the lives of over 300 children a year, and advocates say congress believes that number is not big enough to invest in.    

The DIPG Advocacy Group, organized by childhood cancer advocate Janet Demeter of Agua Dulce, prepared a trip to Washington DC for the week of April 16 to visit the offices of Congress in support of  the DIPG Awareness Resolution, a bill designed to set aside money to fund DIPG research.

A previous house resolution, jointly introduced by Congressman Steve Knight, R-Santa Clarita, and Jackie Speier, a Democratic California Representative, designated national DIPG Awareness Day on May 17.

DIPG develops in the pons area of the brain stem, which is responsible for neural transmissions to and from the brain to the body, and is also the most protected area of the body.  The cancer is resistant to conventional medical chemotherapy treatments, and is inoperable.

The median survival time post-diagnosis is nine months with radiation treatment, and long-term survival prognosis is less than one percent, according to officials.

DIPG is arguably one of the world’s deadliest pediatric cancers, according to Demeter.

The resolution encourages greater research consideration for children and the dying in our current medical research system, which, according to Demeter is, “nonapologetically and systematically divested of concern.”

The group traveling to DC consisted of legislative candidates, activists and the families of DIPG patients. Among the group was Melany Knott of Mt. Airy, Maryland and her daughter Kaisy, 13, who is in active experimental treatment in Monterrey, Mexico for DIPG.

Oftentimes when a child is diagnosed with DIPG, parents are routinely told to go ahead and make memories, and enjoy their last moments with their child, according to officials.

Over the last 50 years little has been done to find treatments and cures for DIPG, DIPG Advocacy Group officials said.

“Neil Armstrong’s daughter died of DIPG in 1962, and today’s standard treatment protocol and terminal prognosis have seen no change since then,” said a news release from the organization.

Demeter, the advocacy organizer, lost her son in July 2012 to DIPG, and because of that she is now fighting for young children so their families don’t have to go through what she went through.

“It was a hope-obliterating experience,” she said of her son’s death. “And to discover that there has been insufficient research activity for decades, literally, because the numbers aren’t great enough for investors. As if this were a rationale for doing nothing. It’s terrible, beyond my ability to explain.”

For more information about this event, the DIPG awareness movement, and the activities of the DIPG Advocacy Group, click here.

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