[Sign Up Now] to Receive Our FREE Daily SCVTV-SCVNews Digest by E-Mail

Inside
Weather
Santa Clarita CA
Intermittent clouds
Intermittent clouds
78°F
 
Calendar
Today in
S.C.V. History
August 15
1849 - Eight-pound gold nugget found in San Feliciano Canyon (Val Verde/Piru area) [story]


Scott Wilk

Scott Wilk

California Senator Scott Wilk (R-Antelope Valley) will introduce the 2018 DIPG Awareness Resolution, designed to boost public awareness of the deadliest and second most common pediatric brain cancer, at the State Capitol in Sacramento on Thursday, May 17.

Wilk will be accompanied by several families who have children suffering from DIPG, or diffuse intrinsic pontine glioma, according to a news release from the nonprofit Jack’s Angels Foundation.

May 17 will also be DIPG Awareness Day in upwards of 25 other states. In 2017, 22 states adopted similar resolutions due to the efforts of advocates and affiliates of the Michael Mosier Defeat DIPG Foundation in Bethesda, Maryland.

The foundation was the organizing influence for the “DIPG Across the Map” Project, which began efforts to establish May 17 as DIPG Awareness Day in 2016.

What began in 2014 in California as the first State Awareness Resolution for DIPG has become a national phenomenon for childhood cancer awareness.

The first DIPG awareness resolution in 2014, ACR151, was inspired by the compassion of then-State Assemblyman Scott Wilk upon his discovery of the story of a local family who lost their son to DIPG, and Jack’s Angels, the charity through which they began to raise awareness to the devastating lack of research funding for pediatric brain cancer.

Jack’s Angels was born of the experience which so many families have no choice but to endure: a death-sentence at diagnosis and a brush with the reality of our medical research system and the way research is funded, that there are no solutions because “the numbers aren’t great enough for investors.”

According to Janet Demeter, founder of Jack’s Angels, this experience has been one of the strongest motivations for her advocacy work, as the current system, unlike the typical emergency room, is “devoid of concern” for these children’s lives for all practical purposes.

May is Brain Tumor Awareness Month, and brain cancer is the leading cause of death in children with cancer, hence its importance in the childhood cancer community.
DIPG is responsible for the majority of brain tumor deaths in children annually in the United States.

Research for brain cancer has been historically underfunded, such that the same standard treatment protocol of radiation is used today for DIPG as was used 50 years ago, with the same prognosis: terminal.

DIPG is a diffusely infiltrating malignancy originating in the pons, the area of the brain stem responsible for neural impulses and transmissions to and from the body to the brain.

DIPG is an extremely aggressive cancer, so the two most prominent challenges to treating it are its location and the efficacy of the chemotherapy used, as traditional systemic chemotherapy has shown no significant effect on the terminal outcome.

DIPG research straddles the frontiers of both neuroscience and oncology; despite the lack of funding from the private sector and the federal government, the uprising of dozens of foundations led by bereaved parents have been, collectively, footing the bill for some of the most groundbreaking research in genetics, neuroscience, and personalized medicine.

Both raising funds and awareness to the urgent need for research are a herculean effort for bereaved parents in a culture which is largely unaware of the suffering which continues in quiet desperation, yet boasts the greatest wealth and technological capability in the world.

“The importance of DIPG is in its example; all pediatric cancers are marginalized as rare and receive inadequate research funding, and the resulting experience of hopelessness is unacceptable,” Demeter said.

“The intensity and prevalence of human suffering, in the case of our children with brain cancer, is largely ignored or placated with commercial images and skewed statistics about survival for children with cancer,” she said. “Most people simply don’t know that our children are not a priority unless pediatric cancer directly impacts them or someone very close to them.”

The National DIPG Awareness Resolution, H.Res.69, was first introduced to the 114th Congress as H.Res.586 in January of 2016, by Congressman Steve Knight (R-CA-25) who was CA-State Senator in 2014 when the first Resolution appeared in the California Legislature.

For the 2017 introduction to the 115th Congress, H.Res.69 designates May 17 as the National Awareness Day for a congruent effort with the “DIPG Across the Map” project in the states.

Most importantly, it confronts the inadequacy of our current system to address the needs of the pediatric cancer population, and suggests that high-risk cancers and years of life lost have greater consideration in the research grant process in the public and private sector.

“We have to fight so hard to pass childhood cancer legislation, and to make sure the NIH gets adequate funding,” Demeter said. “My hope is that this ‘little bill that could’ might raise greater public awareness to the neglect of funding for pediatric research, that the fight might not be so terribly long and difficult, that the STAR Act, Kids First 2.0, RACE and 20th Century Cures Act would be undeniable.”

The DIPG Advocacy Group, an association of individuals and DIPG foundations led by Jack’s Angels, began in December of 2017 with an initial trip to Washington D.C. to raise greater awareness for the bill which had, at that point, been sitting in the Energy and Commerce Committee for two years without attention while another 800 children, roughly, passed away in the United States to DIPG.

The larger childhood cancer advocacy organizations did not put H.Res.69 on their agendas for their “action days” in Washington in 2017, so H.Res.69 supporters began their own advocacy group with international reach. Since the work of the group began, 12 more co-sponsors have signed on to H.Res.69.

“The challenge of the House, though the resolution only needs a House Vote, is daunting,” Demeter said. “We’re asking Congress for help to raise awareness, yet we’re stopped by the lack of awareness. Most House Members don’t know it’s there, and the Energy and Commerce Committee has done nothing with it while less consequential bills with political import have sailed right through.

“It’s very frustrating,” she said. “We need either 200+ cosponsors or a suspension of rules — which should be possible as the rules and attending protocol states, but we’re just little guys asking.”

The DIPG Advocacy Group has already moved to petition the Senate for help, as the DIPG community is better organized at the level of the states than that of Congressional Districts; “the crushing DIPG experience doesn’t lend itself to immediate enthusiasm for advocacy,” Demeter said.

Senators McCain, Rubio, Cruz, and Gardners staff have given supportive feedback for a Senate Resolution on the Republican side so far, with the staffs of Reed, Warner, Warren and Harris on the Democratic side indicating support during their last trip to Washington in April 2018, according to Demeter and other sources within the group.

Still, DIPG Awareness Day will be heralded in more than half of the United States this year as many will be keeping their fingers crossed for a House Vote.

In California, Demeter and several other moms will be driving to Sacramento for the Senate presentation with Wilk Thursday morning at 9 a.m. sharp, and then turning back to make it home in time for the 6th Annual Powderpuff Football Game at Vasquez High School in Acton.

When asked why she had to make it back for the game, she replied: “It’s so important to acknowledge our kids and the fact that they can and will change our world for the better. Vasquez High School has been supporting Jack’s Angels since our first year and any success we have had in our mission is largely due to those kids and the local support of the Santa Clarita Valley Chamber of Commerce and our local media outlets.”

An awards ceremony at half-time honors Principal Ty Devoe, Assemblyman Dante Acosta, Wilk, Knight, The Country Journal, KHTS Radio, Santa Clarita Magazine, the Santa Clarita Valley Chamber of Commerce, and others.

The game starts at 6 p.m. at Jorgensen Field, 33630 Red Rover Mine Rd. in Acton.

For more information about Jack’s Angels, click here, and for more details about H.Res.69, visit www.hres69.org.

 

Comment On This Story
COMMENT POLICY: We welcome comments from individuals and businesses. All comments are moderated. Comments are subject to rejection if they are vulgar, combative, or in poor taste.
REAL NAMES ONLY: All posters must use their real individual or business name. This applies equally to Twitter account holders who use a nickname.

0 Comments

You can be the first one to leave a comment.

Leave a Comment


SCV NewsBreak
LOCAL NEWS HEADLINES
Tuesday, Aug 14, 2018
SCV Sheriff’s Offer Back to School Safety Tips
As always with the schools, there is going to be congestion twice per day with the drop off and pick up of students. Drivers need to be extra patient in these areas to help traffic flow.
Tuesday, Aug 14, 2018
Crime Blotter: Petty Theft, Commercial Burglary in Newhall
Here is the Newhall Public Safety and Crime Information Report for July 30, 2018 - Aug. 5, 2018:
Tuesday, Aug 14, 2018
Crime Blotter: Burglary, Robbery, Grand Theft in Valencia
Here is the Valencia Public Safety & Crime Information Report for July 23, 2018 - Aug. 5, 2018:
Keep Up With Our Facebook

Latest Additions to SCVNews.com
1849 - Eight-pound gold nugget found in San Feliciano Canyon (Val Verde/Piru area) [story]
Here is a list of Santa Clarita arts-related events for Aug. 15 - Aug. 17:
Aug. 15-17: Santa Clarita Arts Calendar
Walk season is quickly approaching, and it's time to turn up the heat in the fight to end Alzheimer's.
Walk to End Alzheimer’s Offers up New Challenge
Twelve people are challenging incumbent Mayor Laurene Weste, Mayor Pro-tem Marsha McLean and Councilman Bill Miranda in the upcoming November 6 election. They are:
List of Candidates Running for City Council Released
As always with the schools, there is going to be congestion twice per day with the drop off and pick up of students. Drivers need to be extra patient in these areas to help traffic flow.
SCV Sheriff’s Offer Back to School Safety Tips
The Valley Industry Association will be holding its, "Hot August Nights Party," on Thursday, Aug. 23, from 5:30 p.m. to 7:30 p.m. for a night of fun, friends and a little business.
Aug. 23: Valley Industry Association’s Hot August Nights Party
Your personal brand is the engine of a successful career. Having a strong online presence can lead to new jobs and career opportunities.
COC’s Community Education to Hold Personal Branding Workshop
The Canyon Country Advisory Committee (CCAC) will hold their next meeting Wednesday, Aug. 15 from 7:00 p.m. - 9:00 p.m.
Aug. 15: Canyon Country Advisory Committee Meeting
Santa Clarita RE/MAX Realtor Josh Sinatra, of Sinatra Real Estate, spearheads back-to-school donation drive to help people in need.
Local Realtor Hosting Shoe Donation Drive for People in Need
Henry Mayo Newhall Hospital is pleased to announce that Logix Federal Credit Union has generously stepped forward to sponsor a palliative care teddy bear program at the hospital to help children feel supported and comforted when faced with the passing of a parent.
Logix Steps Forward to Help Henry Mayo’s Palliative Bear Program
The Santa Clarita Valley Special Education Local Plan Area (SELPA) actively encourages parents or community members who know of a child (birth to age 22) who may have special needs to contact their local school district office.
SCV School Districts Providing Services for Students with Special Needs
The WiSH Education Foundation is thrilled to announce that its fourth annual signature event, Cocktails on the Roof, is back on Sept. 7, 2018. The event runs from 8:00 p.m. - 11:00 p.m.
Sept. 7:  Cocktails on the Roof Benefiting WiSH Foundation
Here is the Newhall Public Safety and Crime Information Report for July 30, 2018 - Aug. 5, 2018:
Crime Blotter: Petty Theft, Commercial Burglary in Newhall
RANCHO CUCAMONGA – After sweeping Rancho Cucamonga in Lancaster last weekend, the JetHawks were swept by the Quakes at LoanMart Field after falling Sunday afternoon, 5-2. The JetHawks scored the first two runs of the game, but were held to just three hits after.
Quakes Sweep JetHawks
The next regular meeting of the Governing Board of the William S. Hart Union High School District is Wednesday, Aug. 15, at the Administrative Center, 21380 Centre Pointe Parkway, Santa Clarita 91350.
Aug. 15: Hart District Governing Board Regular Meeting
Here is the Valencia Public Safety & Crime Information Report for July 23, 2018 - Aug. 5, 2018:
Crime Blotter: Burglary, Robbery, Grand Theft in Valencia
RANCHO CUCAMONGA – Matt Dennis set a career-high with 11 strikeouts, but Lancaster fell to Rancho Cucamonga, 3-1, Saturday night at LoanMart Field. Dennis took the loss despite allowing only two runs in six innings.
JetHawks Fall to Rancho Cucamonga
Here is the Stevenson Ranch Public Safety and Crime Information Report for July 27, 2018 - Aug. 2, 2018:
Crime Blotter: Petty Theft, Domestic Violence in Stevenson Ranch
Saugus High School’s cheerleading squads are hosting a cheer clinic fundraiser Sept. 23 that will teach cheer skills to kindergartners through eighth graders, who will then have an opportunity to cheer the first quarter of a Saugus varsity football game in October.
Sept. 23: Saugus High Cheer Squads Hosting Youth Clinic
1986 - Canyon Country's Mitchell adobe demolished; components salvaged & later rebuilt at Heritage Junction [story]
The historic Big Oaks Lodge on Bouquet Canyon Road in Saugus, destroyed by fire late Saturday night and early Sunday morning, probably cannot be rebuilt at its current location because of permit and code requirements, Angeles National Forest officials said Monday.
Forest Service Unlikely to OK New Big Oaks Lodge in Same Spot
The Lancaster JetHawks saw their six-game win streak come to an end in a 7-4 loss to the Rancho Cucamonga Quakes on Friday night at LoanMart Field.
JetHawks Streak Snapped in Loss to Quakes Friday
The city of Santa Clarita has updated the list of productions shooting in the city and the Santa Clarita Valley the week of Aug. 13-19, 2018.
‘Santa Clarita Diet,’ ‘America’s Got Talent’ Now Filming in SCV
The Los Angeles County West Vector Control District and the County Department of Public Health have confirmed that a mosquito sample collected in Playa Vista is the first positive for the St. Louis Encephalitis virus in the county for 2018.
St. Louis Encephalitis Virus Found in LA County Mosquitoes
1961 - First Mass celebrated at new Our Lady of Perpetual Help Catholic Church (3rd building) in Newhall. Cardinal McIntyre attends [story]
A fire broke out inside the historic Big Oaks Lodge in Bouquet Canyon late Saturday night, and by early Sunday, the popular 2-story wooden restaurant building was gone.
Witness: Kitchen Fire Destroys Big Oaks Lodge in Bouquet Canyon (Video)
1944 - Newhall Refinery on Sierra Highway destroyed by fire (then rebuilt) [watch film]
2018 - Big Oaks Lodge in Bouquet Canyon burns down. [video]
The Los Angeles Dodgers placed All-Star closer Kenley Jansen on the 10-day disabled list with an irregular heartbeat and recalled switch-handed pitcher Pat Venditte from Triple-A Oklahoma City on Friday.
Irregular Heartbeat Lands Dodgers Closer Kenley Jansen on DL
The Los Angeles Dodgers Friday announced that fans 21 years of age and older will be able to purchase beer from in-seat vendors at Dodger Stadium starting at Monday’s 7:10 p.m. game against the San Francisco Giants.
Dodgers to Start In-Seat Beer Service Monday
The historic Rim of the Valley Corridor may be added to the Santa Monica Mountains National Recreation Area if a U.S. Senate Energy Committee subcommittee moves to approve legislation authored by Sen. Dianne Feinstein (D-California).
Senate May Add Rim of Valley Corridor to Santa Monica Mountains Rec Area
A San Francisco jury on Friday found that Monsanto must pay $250 million in punitive damages to a school groundskeeper because its Roundup weed killer caused his fatal lymphoma, the first such verdict against the agrochemical giant.
Jury: Roundup Kills More Than Weeds; Monsanto Must Pay $289 Mil.
A federal judge Friday praised the joint plan by federal officials and the American Civil Liberties Union to quickly reunite families separated at the U.S.-Mexico border under President Donald Trump’s “zero tolerance” immigration policy.
Judge Praises Feds’ Plan to Reunite Immigrant Families
The Los Angeles Dodgers reinstated right-handed pitcher Ross Stripling from the 10-day disabled list and optioned switch-handed pitcher Pat Venditte to Triple-A Oklahoma City on Thursday.
Dodgers Reinstate Hurler Ross Stripling
The next meeting of the Los Angeles County Board of Supervisors is set for Tuesday, Aug. 14, starting at 9:30 a.m.
Aug. 14: LA County Board of Supervisors Meeting
The Academy of Motion Picture Arts and Sciences and The Linux Foundation on Friday launched the Academy Software Foundation to provide a neutral forum for open source software developers in the motion picture and broader media industries.
AMPAS, Linux Launch Academy Software Foundation