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SCVNews.com | May 17: National DIPG Awareness Day Raising Awareness for Rare Disease | 02-07-2017
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Jack’s Angels Foundation of Santa Clarita, CA, organizes a run in Washington DC with other activists to celebrate and harken the introduction of the National DIPG Awareness Resolution to Congress on Monday, January 30, 2017. The day also marks opening registration for Jack’s Angels Relay for Research, which includes a Virtual “Relay for Jack” in support of the Resolution and National DIPG Awareness Day, May 17.

For decades, “there’s nothing we can do” has been the standard phrase used with families at diagnosis time for children with DIPG, diffuse intrinsic pontine glioma. A rare disease, technically, affecting 200 to 400 children per year in the US, DIPG has seen no progress in its terminal prognosis nor significant change in standard treatment protocol since Neil Armstrong’s daughter Karen died of it in 1962.

Of course, the immediate assumption is that this is because it is considered rare yet the latest statistics inform us that brain tumors are the leading cause of death in children with cancer, and DIPG is responsible for most of these deaths each year. DIPG is the second most common pediatric brain tumor; though it may be a small population annually, it’s hardly irrelevant. There’s a killer on the loose in the United States taking the lives of more than 300 children per year; if this were a person, it’s likely we would be doing everything in our power to bring him to justice. But in the realm of the medical research system, we do not.

On January 30, 2017, Congressman Steve Knight (R-CA-25) will introduce the National DIPG Awareness Resolution to the House of Representatives along with co-sponsor Congresswoman Jackie Speier (D-CA-14), which raises awareness to the plight of childhood cancer using the powerful example of DIPG. It also calls for May 17, 2017 to be National DIPG Awareness Day. “After you find out there’s nothing that can be done, the grief begins, you remain in this world of suspended animation as you helplessly watch your child die. Along the way you discover when you ask ‘why’, the answer is the same everywhere you turn, ‘the numbers aren’t great enough for investors.’ The dying, and children, are clearly not priorities in our medical research system,” insists Janet Demeter, founder and President of Jack’s Angels Foundation in Agua Dulce, CA, who contributed to the text of the legislation along with conferring experts Dr. Michelle Monje of Stanford University, Dr. Adam Green of the University of Colorado at Denver, and the Office of Congressional Relations at the National Cancer Institute.

Unfortunately, less than 4% of our national budget for cancer research with the National Cancer Institute directly targets pediatric cancer as a singular designation; the fate of DIPG children and their families is a common theme in the childhood cancer community, as the private sector contributes much less to pediatric cancer research. For many of the most lethal varieties of childhood cancer, there simply is no research funding. In the last 30 years, only 3 drugs have been specifically developed for pediatric cancers, with most children having to receive treatments with harsh drugs developed for adults over 25 years ago.

“It’s been mostly parent initiated foundations for diseases like DIPG funding the research, which is an enormous burden for our bereaved families,” notes Demeter, who asserts that the Resolution is the only piece of legislative text which directly addresses these issues specifically, and asks that children and high-mortality-rate cancers be priorities for research grants with the NCI National Cancer Institute and private sector alike in our medical research system.

To support and herald the introduction of the Resolution, Monday Jan. 30 at 10 am real-time, Demeter will be running through Washington DC with advocates Christopher Winters, Chief of Staff to Tom Caltagirone of the PA Legislature, and Jonathan Agin, Executive Director of MaxCure Foundation, in Washington DC on the National Mall, the Capitol, and by the White House. MaxCure Foundation recently adopted the grassroots program “Run for the White House” on Facebook developed by Brian Jones, activist runner and advocate for children with cancer, recently featured on Childhood Cancer Talk Radio. “It will be amazing to run with them; I’ve been running for a National Day for DIPG since 2014, with angel wings and ribbons for DIPG children to signify the fact that they virtually all die,” says Demeter, “it’s a life decimating experience for most families, and it must change. Runners are messengers, historically speaking, and it’s the only reason I run today.”

Jack’s Angels Relay for Research awareness project supports the Resolution and benefits a research project for DIPG with Dr. Charles Keller at the Children’s Cancer Therapy Development Institute (CC-TDI) in Beaverton OR. On January 30th, 2017, the virtual “Relay for Jack” event opens registration, encouraging childhood cancer awareness supporters across the globe to walk or “Run for DIPG” on or during the week of the 17th of each month until May 17, as “action days”, also encouraging the population to encourage their Congressional Representatives to sponsor the Resolution. This is the virtual companion to Jack’s Angels Foundation’s local “Run the Rocks!” event at Vasquez Rocks County Park in Agua Dulce, CA, on April 30, 2017, with open registration on Active.com. “We’re still waiting for an awesome athletic company to offer a promotional shoe in support of the research, and the Resolution, which honors thousands of children who bravely faced their early death, and so many struggling to stay alive right now–that we are fighting for them!”

In a larger and more powerful companion effort, the Michael Mosier Defeat DIPG Foundation in Bethesda, MD, authored a 50-State Project called “DIPG Across the Map,” encouraging volunteers to work for a May 17 Awareness Day in each state. Jack’s Angels is working with others in California, as the CA State Legislature first declared a “DIPG Awareness Week” in 2014, part of the ACR151 provision of then CA State Assemblyman Scott Wilk. “We jumped on the May 17th date for a cohesive effort for DIPG with the Michael Mosier Defeat DIPG Foundation, at the State and Federal level; last year we lacked enough ‘evidence’ nationwide that this Resolution was widely desired for a Presidential Proclamation,” Demeter continued, “we are all in this together for 2017.”

When asked about her expectations with the new Administration, she admitted, “there’s the challenge of forging new communication, but I was encouraged by President Trump’s insistence in his Inaugural Address that those who have been ignored will be no more, very encouraged. DIPG families have been expected to accept a death sentence and watch their children die for decades, helplessly, while we could be doing something about it and we don’t. I am hoping he will be responsive to our requests for a Presidential Proclamation for DIPG.” Janet Demeter is also host of “Childhood Cancer Talk Radio,” a weekly internet radio show airing live at 4pm ET on TogiNet.com.

For more information about the National DIPG Awareness Resolution and Jack’s Angels Relay for Research, visit http://runforDIPG.org, or Jack’s Angels main page http://jacksangels.org.

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