Congressman Knight Attends Santa Clarita Event 2/13 Celebrating HRes586, Chad and Jack’s DIPG Resolution
“More still needs to be done for our kids; while I was hopeful of Moonshot, I also noticed that it continues to marginalize childhood cancer, where it should be front and center of the Initiative,” said Demeter, “especially when scientists often concede that prioritizing childhood cancer for research is the pathway to a cure, yet they continue to be neglected because investment in the research doesn’t appear to be immediately profitable. This is an unacceptable reality.”
Feb. 10, Santa Clarita—Congressman Steve Knight(R-CA-25), known primarily for his legislative work supporting veterans and small business, is now being heralded as “Hero for Children with Cancer” by Jack’s Angels, a Santa Clarita charity for pediatric brain tumor awareness and support, which states that the leading cause of cancer-related death in children, brain cancer, is historically one of the least-funded areas of cancer research both for the private sector and our National Cancer Institute. “If anyone really needed a Moonshot, it’s our children with brain cancer,” relates Janet Demeter, President of the foundation. HRes586 was introduced January 13, 1016, the day after the Moonshot Initiative introductory speech by Vice President Biden at the State of the Union Ceremonies for 2016. Congressman Knight’s office worked with Jack’s Angels, Dr. Monje of Stanford University, and NCI representatives to coordinate important information into the drafting of this bill. Demeter explained, “Parents of children with DIPG, the deadliest brain tumor, are told that there are no solutions for their child because ‘the numbers aren’t great enough for investors,’ which is essentially being told that their child’s life doesn’t matter to ‘the system’.”
HRes 586 calls for more consideration of low survival rates and years of life lost in the NCI research grant process. It also designates the 4th week in May as “DIPG Awareness Week,” and calls for more awareness and research for pediatric brain tumors, and pediatric cancer in general.
Knight will attend the “Skip for Jack!”(9:45am) at the Santa Colorita 5k Fun Run this weekend at Castaic Lake Recreation Area, a portion of the running event which begins at 8am. The Skip benefits Jack’s Angels Foundation, and memorializes little Jack Demeter(8-30-08 – 7-30-12), a Santa Clarita resident who perished to DIPG in 2012. HRes.586 is named for Jack and also Chad Carr of Ann Harbor MI, who was the inspiration for the ChadTough Foundation, just recently benefiting from Coach Beilin’s win of the Infinity Coaches Charity Challenge with a gift of $100,000, designated to DIPG research.
“Raising awareness for DIPG is long overdue, and this resolution will help bring us one step closer to ending childhood cancer once and for all,” said Rep. Knight. “Nothing hurts parents more than knowing there’s nothing they can do to keep their children from suffering. I am extremely grateful for all of the work Janet has done on this issue and look forward to bringing this cause to the national stage.”
Knight was joined by Representative Jackie Speier (D-CA-14) in introducing H. Res. 586, along with six other original cosponsors, including both Chairs of the Congressional Caucus for Childhood Cancer, Reps McCaul (R-TX-10) and VanHollen (D-MD-8). The resolution was referred to the House Energy and Commerce Committee, where it will be considered in the coming months.
“More still needs to be done for our kids; while I was hopeful of Moonshot, I also noticed that it continues to marginalize childhood cancer, where it should be front and center of the Initiative,” said Demeter, “especially when scientists often concede that prioritizing childhood cancer for research is the pathway to a cure, yet they continue to be neglected because investment in the research doesn’t appear to be immediately profitable. This is an unacceptable reality.”
To participate in the Skip for Jack! and the Santa Colorita 5k Run, registration is still open at www.santacolorita.com. Along with Congressman Knight, Jack’s Angels guests of honor include “Katherine the Brave”(Katie King, 6) and Natalie Avila(3), both diagnosed with DIPG. Contributing to the fun of the event is the Children’s Fun Area sponsored by Mountasia, Complete Fit Kid and Tonka Toys. The Santa Colorita 5k is hosted by the Santa Clarita Valley Chamber of Commerce which, according to Demeter has been one of the greatest supports to Jack’s Angels mission. “If it weren’t for Terri, the Staff and the Board, Jack’s Angels wouldn’t have the voice it does today. I remain forever obliged.” For more information about Jack’s Angels, their activities and programs, visit www.jacksangels.org. To support and follow the progress of HRes586, visit bit.ly/HRes586-follow .
