{"id":4788,"date":"2016-08-21T07:46:00","date_gmt":"2016-08-21T14:46:00","guid":{"rendered":"https:\/\/jacksangelsfoundation.com\/?p=4788"},"modified":"2025-05-12T10:02:31","modified_gmt":"2025-05-12T17:02:31","slug":"regional-cancer-moonshot-summit-report","status":"publish","type":"post","link":"https:\/\/jacksangelsfoundation.com\/?p=4788","title":{"rendered":"Regional Cancer Moonshot Summit Report"},"content":{"rendered":"

Cancer Moonshot Summit Report\u2014Regional, Jack\u2019s Angels Foundation, Santa Clarita, CA<\/strong><\/p>\n

SCVTV Around Town Report<\/a><\/p>\n

\"_03A7536\"<\/a>

Some of our group<\/p><\/div>\n

On June 29, 2016, we were a group of 17 convening at The Master\u2019s College in Santa Clarita for one of the few Southern California Regional Moonshot Summits, from a diversity of backgrounds and experience with regard to cancer.\u00a0 There were three families of children with cancer, and two families represented who had lost a child to cancer.\u00a0 Everyone in the room had lost someone to cancer, and many were survivors.\u00a0 Of the 270 groups across the United States, there were 4,700 total in attendance; our group fit the median number almost exactly.
\n<\/a>Vice President Biden had convened some 270 people for a phone conference on May 26 to ask that each consider hosting a Regional Summit in their local community.\u00a0 The idea was to have massive brainstorming sessions across the United States in concert with the Washington DC Summit held by the Vice President himself.\u00a0 As a member of CAC2, Jack\u2019s Angels received a report from those members who attended the Washington DC Summit, which will be summarized toward the end of this overview.<\/p>\n

There was a very specific format and protocol that Summit Hosts were to follow, including a meet and greet, a specific format of topics, a panel of presenters, and a conference call with the Vice President.<\/p>\n

\"_03A7528\"

Tracy Ryan of CannaKids<\/p><\/div>\n

Our group of presenters, including one absentee presentation and one telecom presentation, were as follows:\u00a0 Louise Hyland,<\/strong> breast cancer survivor, author of \u201cLearning to Cry\u201d, international speaker, comedienne, and communications consultant; www.louise-hyland.com<\/a> ,\u00a0 Tracy Ryan<\/strong> founder of Cannakids, cannabis-centered clinical oncology group, and of Saving Sophie, \u00a0<\/em>an organization documenting the journey of her daughter living with brain cancer at www.savingsophie.org<\/a> , Aryn Sieber<\/strong>, 9\/11 1st<\/sup>-responder, Stage IVa Squamous Cell carcinoma survivor, founder of Cannacauses and the Compassionate Cannabis Community; www.cannacauses.org<\/a> , Lisa Solis Delong,<\/strong> author of \u201cBlood Brothers\u201d, public speaker, bereavement facilitator, mother of two boys diagnosed with leukemia; one deceased (Justin), her other son Jacob lives in complete remission, Dr. Charles Keller<\/strong>, co-chair of the Brain Tumor Developmental Therapeutics Committee (CNS-DVL) of <\/a>the Children\u2019s Oncology Group; co-founder of cc-TDI, Children\u2019s Cancer Therapy Development Institute in Beaverton, OR, author of over 80 scientific publications and expert in the pre-clinical investigation of childhood cancers; www.cc-TDI.org<\/a> , Jaime King<\/strong> (brief absentee presentation) mother to Katie, Katherine the Brave<\/em>, passed away 6\/6\/2016 from DIPG, a pediatric brain tumor responsible for 80% pediatric brain tumor deaths annually; www.katherinethebrave.org<\/a> , and finally Janet Demeter,<\/strong> founder of Jack\u2019s Angels Foundation for DIPG<\/strong> awareness and research, advocate and activist for children with cancer, host of \u201cChildhood Cancer Talk Radio\u201d on TogiNet.com; Janet\u2019s son Jack died of DIPG in 2012; www.jacksangels.org<\/a> .<\/p>\n

Topics for consideration during the Summit included<\/p>\n

    \n
  1. Putting the patient at the center of access and care<\/li>\n
  2. Disparities in Cancer care<\/li>\n
  3. Financing pediatric cures for cancer<\/li>\n
  4. Supporting preventative health behaviors<\/li>\n
  5. Imagining a fully connected health care continuum<\/li>\n
  6. Solving the technical challenges to unleash the power of data<\/li>\n
  7. Data: To what End?<\/li>\n
  8. Strategies for integrating advances in cancer treatment into community care<\/li>\n
  9. Recruiting and maintaining participants in clinical research<\/li>\n
  10. Incentivizing breakthrough research discoveries in Cancer<\/li>\n<\/ol>\n

    The details of the Summit were to be reported immediately by the Host to the Office of the Vice President, answering a select group of specific questions referring to one of the topics above, in an attempt to keep responses organized enough for the OVP to compile and consider the data received in this massive outpouring of information.<\/p>\n

    \"Louse<\/a>

    Louse Hyland<\/p><\/div>\n

    Collaboration, collaboration!\u2014was the word which was most important to the discussion.\u00a0 Tracy Ryan and Aryn Sieber both gave compelling arguments for the de-criminalization of cannabinoid use and education for the efficacy and applications of use for cannabinoids.\u00a0 To have these therapies available to patients in the United States was a message unanimously accepted, but the challenges to accomplish this are daunting and demand awareness and collaboration. \u00a0\u00a0Louise Hyland, breast cancer survivor and international speaker, stressed the importance of awareness, communication, and humor for personal healing.\u00a0 The psycho-social aspects of caring for cancer patients was a strong factor to all discussions, especially Robb Bolton\u2019s contribution of fitness support with his company Cancer Fit. \u00a0His experience demonstrated the positive effects in health and morale for survivors, and the importance of personal health and fitness for prevention.<\/p>\n

    \"Lisa\"<\/a>Lisa Solis DeLong, nurse, author, bereavement facilitator, and mother of 5 having lost one son to leukemia and her other son a survivor of leukemia, brought to us the importance of spirituality, wisdom and grief recovery and the importance of humanity in health care.\u00a0 Especially so with cancer care, she stressed the importance of the holistic nature of life that goes unaddressed or is ignored completely in our system today.\u00a0 This was perhaps the most healing of the presentations given that day.<\/p>\n

    Dr. Charles Keller of the Children\u2019s Cancer Therapy Development Institute and Children\u2019s Oncology Group of NCI gave the most hopeful presentation demonstrating how the power of parent-funded research is making great strides on the frontiers of pediatric cancer research today.\u00a0 He described the drug combination therapy and development project, ongoing with the COG around the world, is offering hope for the deadliest pediatric cancers like DIPG.\u00a0 The only barrier to progress is inadequate funding.<\/p>\n

    \"Jaime<\/a>

    Jaime and Katie<\/p><\/div>\n

    Jaime King, mom to the recently deceased \u201cKatherine the Brave\u201d or Katie King, was unable to attend but a brief video was shown to portray the reality suffered by every DIPG family; brief relief of symptoms followed by rapid decline and death.\u00a0 The video emphasized the importance of supporting legislation and awareness resolution for DIPG, HREs586, the only bill to ask for elevated consideration of the lowest survival rate cancers and years of life lost with the NCI research grant process.<\/p>\n

    In review of the Summit, all participants left with greater knowledge and awareness of resources available to them.\u00a0 One family attended with a daughter who had just been diagnosed with leukemia; meeting Lisa DeLong was especially helpful as they began their journey.\u00a0 Mrs. DeLong helped them connect with institutions and doctors who would be overseeing the child\u2019s case.<\/p>\n

    \"_03A7509\"<\/a>Janet Demeter shared her experience with DIPG, the loss of her son, and the subsequent lessons that she learned about pediatric cancer research funding.\u00a0 She works for the day when parents no longer hear that there are no solutions for their child because \u201cthe numbers aren\u2019t great enough for investors.\u201d<\/p>\n

    Most of the questions posed by the OVP were directed towards what we can do to incentivize the Moonshot Initiative to cure cancer with Industry, and private sector funding.\u00a0 While this is extremely important, what was missing for me personally was the discussion of our Government funding for cancer research, particularly for pediatric cancer research.\u00a0 Where arguably the deadliest cancers which defy our current science are the logical pathway to a cure, and saving lives is logically an incentive, these are not the priorities in our medical research system and some measures need to be created to address this problem head-on.\u00a0 This was the only shortcoming of the Summit, along with our inability to connect with the Vice President\u2019s address to the Summit in Washington.\u00a0 However, the details of this were forwarded to the Hosts that morning in text to share with the participants.<\/p>\n

    The presentations were well-rounded and lent themselves to prolific discussion and the all-around hopeful energy of the gathering of concerned citizens, and the Summit should be considered a success by most standards.\u00a0 The replies were submitted to the OVP in a timely manner, and there were few topics that our guests were not equipped to address with their personal experience.\u00a0 The Hosts continue to await feedback from their replies now 6 weeks henceforth.<\/p>\n

    Jack\u2019s Angels Foundation received the CAC2 report of the Washington Summit on August 1, 2016, by CAC2 member David Frazer, who wrote:<\/p>\n

    \u201cThe Moonshot Summit was an event that gathered the principals within the oncology industry under the inspirational leadership of Vice President Biden.\u00a0\u00a0 In my opinion, all politics aside, Mr. Biden portrayed the type of leadership necessary to conduct systematic change to defeat cancer.\u00a0 Historically, he has always been a champion for public health.\u00a0\u00a0 The summit was based on collaboration and change, and Mr. Biden facilitated an effective initiative to drive those focus topics.\u00a0 On June 29, the Vice President gathered 300 cancer experts and advocates to Howard University. Of the 14 advocates and foundations representing pediatric cancer, all but two were CAC2 members, including both of the people selected to attend the closed afternoon small group working session with Vice President and Dr. Biden.<\/em><\/p>\n

     <\/p>\n