Relay for Jack: Local Communities come together in support of National DIPG Awareness Week

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Relay for Jack: Local Communities come together in support of National DIPG Awareness Week

chadandjackslabel1May 24, 2016, Santa Clarita, CA—HRes586 was introduced to the House of Representatives Energy and Commerce Committee on January 13, 2016, by Congressman Steve Knight (R-CA-25) the day after the Moonshot Initiative was introduced as part of the State of the Union Ceremonies January 12, 2016. HRes586 designates the fourth week of May, which is Brain Tumor Awareness Month, as National DIPG Awareness Week in honor of the thousands of mostly very young children who have faced, and continue to face death bravely and with uncompromising certainty as the result of this devastating disease. Diffuse intrinsic pontine glioma, or “DIPG”, is not new to the medical community, but represents the limitations of our current science in the area of neurology, the brain and central nervous system, and in pediatric oncology, childhood cancer. DIPG is perhaps the most aggressive cancer and most evasive of known treatment. Unfortunately, treatment protocol and prognosis for the disease has changed little in the 50 years since Neil Armstrong’s daughter died of it in 1962. With uncanny regularity, approximately 350 new cases present themselves each year in the United States alone, and with the same regularity they perish with a median survival time of 9 months with treatment.
Local activist for children with brain cancer Janet Demeter, CEO of Jack’s Angels Foundation for DIPG Awareness and Research, took on the mantle of fighting for these children diagnosed with DIPG and their families after losing her son Jack to DIPG in July of 2012. “It was the darkest experience of my life,” says Janet when referring to the diagnosis of her son in October of 2011, “All of the sudden it was as if we were on another planet. When we asked why there were no therapies developed for the disease, the answer was the same no matter where we turned, ‘the numbers aren’t great enough for investors.’ We felt as freakish as if we’d been struck by lightning, and this was somehow the justification for the lack of research activity for children like my son. I didn’t realize there were six other children being treated at that hospital for DIPG that year.”
Slide1After Jack died, Janet came to realize the fact that DIPG is not a “rare brain tumor”, but the 2nd most common pediatric brain tumor, the leading cause of cancer-related death in children. “When I learned that DIPG is responsible for roughly 80% of pediatric brain tumor deaths annually I was furious. That families are expected to just accept that their child’s life is worthless to research investors is the motivation for my activism for these kids and their families. HRes586, a simple Awareness Resolution, does something very powerful. It asks for elevated consideration for low-survival rate cancers—urgency, and years of life lost—children, in the research grant process with NCI. Currently, DIPG is like death-row for children, and no matter how much we scream that there’s a house burning down, no one seems to care for fear of offending a bigger building.”
Jack’s Angels and other DIPG foundations have planned their main events to coincide with National DIPG Awareness Week. “Relay for Jack!”, scheduled for this Saturday, May 28 2016, boasts all-day family activities and Relay at Vasquez Rocks County Park in Agua Dulce, CA, bringing together the communities of Santa Clarita, Agua Dulce, and Acton in support of National DIPG Santa Clarita NewsAwareness. Congressman Steve Knight, Assemblyman Scott Wilk, and candidate for 2017 California Assembly Dante Acosta will all be in attendance for Jack’s Angels 2016 Angel Awards, honoring those who have made Jack’s Angels mission possible. Assemblyman Wilk received the 2014-15 “Man of the Year” Award for his contribution to DIPG Awareness in 2014 with ACR151, the precedent-setting “DIPG Awareness Week” in California also designated as the 4th week of May. This year, Demeter has asked the Assemblyman to assist in presenting the same award for 2016 to Congressman Steve Knight for introducing HRes586. Other honorees include Sandra Beck, local media specialist, Lillian Smith of the Country Journal, and Vasquez High School ASB for their annual Powderpuff Football Game, all having contributed consistently in an essential way to Jack’s Angels mission.
“Relay for Jack!” supports a pre-clinical research project for DIPG called “Jack’s 12 Pebbles” at the Children’s Cancer Therapy Development Institute, a new non-profit biotech company devoted to eradicating childhood cancer in all its forms. The Relay includes a 2 ½ mile course, a ½ mile course, and children’s course. Activist runner for children with cancer Everett Smith from Redlands, CA, who joined Demeter in the 200 mi “Run for HRes586” in April, has pledged to run 40 mi for the running event. Information about “Jack’s 12 Pebbles” research project and other event information including can be found at www.relayforjack.org.  For more information about HRes586, visit http://hres586.com.
Staff
Jack’s Angels Foundation
32520 Wagon Wheel Rd.
Agua Dulce CA 91390
661-977-3125
Jacksangels1@gmail.com
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