Diffuse Intrinsic Pontine Glioma (DIPG) Advocacy Group and Jack’s Angels Inc., a Santa Clarita nonprofit for awareness and research for DIPG and pediatric brain cancer, is hosting the virtual, “Rally for Our Children” on Friday, Sept. 25 beginning at 8:30 p.m. EST. in conjunction with Denver-based Guiding Angels Productions.
The rally was originally conceived as Jack’s Angels contribution as “kick-off” for the 2020 CureFest event on Saturday, Sept. 26, which has also gone virtual because of the COVID-19 pandemic and the extension of travel restrictions until Friday, Oct. 9. Originally scheduled to be held on the Southeast lawn of the U.S. Capitol Building, the virtual rally will be broadcast from Colorado, where the tandem virtual 5K, “Race for the Angels” will begin that morning at Red Rocks Canyon Amphitheater at sunrise.
This is largely a tribute race to honor the many children who have lost their lives to diffuse intrinsic pontine glioma or DIPG, the 2nd most common pediatric brain tumor responsible on its own for a significant portion of the annual childhood cancer death toll in the United States.
The annual CureFest event on the third weekend of September on the National Mall serves as an opportunity for the national Childhood Cancer Community to come together, as an exposition for the many childhood cancer foundations across the country, and a walk-event for families to honor their childhood cancer survivors and angels.
The exposition typically includes a “legislative tent” hosted by the Alliance for Childhood Cancer. Jack’s Angels advocacy mission has been to support the National DIPG Awareness Resolution, with the aka’s “#Moonshot4Kids” and, “The Little Bill That Could,” which raises awareness to DIPG, the deadliest pediatric cancer, and the systematic failure of the current medical research investment culture to produce helpful therapies for children. Because CureFest2020 will consist of virtual walks around the country, DIPG Advocacy Group, a coalition of childhood brain cancer foundations co-lead by Jack’s Angels and the Julia Barbara Foundation in Knoxville, TN, are contributing this #Moonshot4Kids Rally to the weekend for those called to activism for children with cancer, and to promote support for all current legislation affecting the childhood cancer community.
“We always use the week of CureFest as an opportunity to schedule meetings with the offices of legislators on Capitol Hill to raise awareness for the urgent need for greater support for pediatric cancer research. For the last 5 years we’ve been using the platform of the DIPG Awareness Resolution, currently H. Res. 114, as a powerful means of educating our lawmakers about pediatric brain cancer and the lack of solutions for deadly cancers like DIPG–which have been neglected for decades,” said Janet Demeter, president of Jack’s Angels.
From the loss of her son Jack to DIPG in 2012, to the first DIPG Awareness Resolution in the California legislature in 2014 introduced by CA-State Assemblyman (now Senator) Scott Wilk, to the first introduction of the National DIPG Awareness Resolution by Congressman Steve Knight (R-CA-25) in 2016, Mrs. Demeter joined up with Elizabeth Psar with the Julia Barbara Foundation and childhood cancer advocate Paul Miller from Littleton, CO, in late 2017 to form DIPG Advocacy Group, expressly for the purpose of supporting the DIPG Awareness Resolution, aka “The Little Bill That Could” for its underdog status.
In further explanation, Demeter explains why singling out a particular disease is so important, referring to the fact that leukemia was a death sentence 40 years ago, and that, by targeting it we have made much progress in saving lives.
“Pediatric brain cancer leads in childhood cancer incidence, and deaths. DIPG needs to be a voice on Capitol Hill for childhood cancer. With all the progress in advocacy as the result of the work of the Alliance for Childhood Cancer, and Kids v Cancer in Washington, the message that most children with cancer have inadequate treatments, if any, is still not adequately making an impact. DIPG is a death sentence. It exemplifies powerfully for childhood cancer the reality that our children, and what we as parents are expected to endure–a death experience which is horrific beyond description– while we wait for our children’s lives to be important enough to the system in place. Without a concrete example like that, and the sounding of an alarm of some kind, which our Resolution does, nothing’s going to happen to help our children quickly enough. This is why we are insistent on its getting 10 minutes for a House vote, now, this Congress. There is always some issue deemed politically more important than consideration for our children’s lives. By the end of this year, another 2000 children will have died of DIPG since the first introduction of the Resolution in 2016.”
Notable Rally speakers included in the program are newly elected Congressman Mike Garcia (R-CA-25) in support of the DIPG Awareness Resolution, Congressman Brian Fitzpatrick (R-PA-1) supporting the Fairness to Kids with Cancer Act of 2019 along with Mina Carroll President of Storm the Heavens Foundation(Philadelphia, PA), Elena Gerasimov representing Kids V Cancer, supporting the Creating Hope Act of 2019, Jenny Mosier with the Michael Mosier Defeat DIPG Foundation and Defeat DIPG Network; DIPG survivor, author, model and actress Grace Wethor (Beverly Hills CA), neuroblastoma survivor Danielle Cloakey (Everett, WA); Jace Ward (Wamego, KS) DIPG patient and pre-law senior at Kansas State, Pediatric neuro-oncologist Dr. Michelle Monje, Stanford University; Jonathan Daniels of the Cystic Fibrosis Foundation (Bethesda, MD) will support the crucial Paid Leave Initiative for the next Coronavirus legislation, and notably Ellyn Miller with Smashing Walnuts Foundation (Leesburg, VA), will speak to the Gabriella Miller Kids First Research Act 2.0, supporting the Kids First Database and Research Program at NIH.
A more complete list, and the #Moonshot4Kids “Rally for Our Children” program will be available with online broadcast viewing instructions Friday, Sept. 18 on the events page at https://dipgadvocacy.org.
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