Making the case for the subject-matter of the DIPG Awareness Resolution:
Worthiness for floor-time in the People’s House, and urgent matter of life and death for a voiceless population
- Moonshot4Kids Cong/Adm Briefing, full program
- Program of Testimony with time stamps
- PDF with links to briefing, the program, and the featured NK Cell Presentation from NKORE Biotherapeutics
Bereavement Exception Protocol: (House Rules) https://www.majorityleader.gov/content/117th-congress-legislative-protocols
“A resolution of bereavement, or condemnation, or which calls on others to take a particular action, is eligible to be scheduled for consideration.”
INTRODUCTION:
PART ONE: Voices Lost to the Front Line: Doctors, Families, Patients
H. Res. 404, Making an Invisible Population Visible
The first hour and 19 minutes constitutes the full briefing for the purpose of establishing the importance of awareness in accelerating cures, the urgency of childhood brain cancer, the unseen, horrific suffering and deaths in our community, and thus the worthiness of H. Res. 404 for scheduling consideration.
Despite impressive progress in research infrastructure and legislation, NOTHING has changed for children with DIPG and other childhood cancers. We possess all the tools, dedicated professionals, and a committed community. Awareness and more funding will save lives sooner.
PART TWO: The Components of Success Aligned | Parent-Driven Research: Consortia, Philanthropy and Government Partnerships
The next hour fills in the gaps of the realities faced by pioneering parent-led foundations The Cure Starts Now and Carson Leslie Foundation, and also the National Brain Tumor Society; State Leadership in Texas with CPRIT, the DIPG Registry, Connect, CCDI, NIH programs with Dr. Brigitte Widemann contributing.
Featured Presentation: NKORE Biotherapeutics
Tracy Ryan, CCO presents ‘Saving Sophie” and the entrepreneurial feats attained with Cannkids and NKORE Biotherapeutics. Tracy, from the diagnosis of her daughter Sophie, has been determined to find a cure for cancer; this leap forward with Dr. Anahid Jewett (UCLA) and Natural Killer Cell therapy originates from “outside the box” of the pharmaceutical and regulatory toolkit.
Cancer Moonshot Team Introduction: Jack’s Angels reports from the original charge from Vice President Biden’s 2016 Cancer Moonshot Initiative and OSTP Team, to create a Cancer Moonshot Summit locally, in Santa Clarita, CA in June of 2016, bringing the charge full circle to the 2022 Briefing.
Program of Testimony (full program, with time stamps)
- Researcher/physicians
- CBTN and PNOC Consortia leaders
- Biotech investment into pediatric research
- Leaders in Philanthropy
- Patient, Family Testimonials ( A few will be featured between the beginning segments)
- Tributes (Ella Brisee, Xavier Tan, and Aspen Agnew, our 5/17/22 Briefing participants who have passed away)
Youtube:
Moonshot4Kids Cong/Adm Briefing, full program: https://youtu.be/Bydyh8OmEF8
Part One: https://youtu.be/EcPmFYpaVAE
Part Two: https://youtu.be/Y4dSld80ytc
NKORE: (Featured Presentation) https://youtu.be/tO3il7jojHk
Cancer Moonshot Team Introduction: https://youtu.be/WGXC8BtSZmQ
Google Drive Links to files:
Full Briefing: https://drive.google.com/file/d/1idPpfHGHyiIysJy73Wu1Kk4zWz-c0G6w/view?usp=sharing
PART ONE: https://drive.google.com/file/d/1wRUREKKKkjYIkFDAAjqEgx_5iwEX6R7h/view?usp=sharing
PART TWO: https://drive.google.com/file/d/1E_HQglWgTEeEqk4C-w_qDB_IzoQaajg5/view?usp=sharing
NKORE: Featured Presentation https://drive.google.com/file/d/1OLJgd99BeY4UcIl2Jg44aiG0xnVguAOO/view?usp=sharing
MORE RESOURCES:
Letter To ALL Members of Congress: https://dipgadvocacy.org/wp-content/uploads/2022/09/0-Sept26_22Congress.pdf
Letter to House Leadership: https://dipgadvocacy.org/wp-content/uploads/2022/10/0-Sept3Leadership_PRINT.pdf
H. Res. 404 Press Summary: https://dipgadvocacy.org/wp-content/uploads/2022/09/117thC-922_Press-Summary_H.Res_.404.pdf
Bereavement Exception Protocol: (House Rules) https://www.majorityleader.gov/content/117th-congress-legislative-protocols