Cancer Moonshot Summit Report—Regional, Jack’s Angels Foundation, Santa Clarita, CA
On June 29, 2016, we were a group of 17 convening at The Master’s 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. There were three families of children with cancer, and two families represented who had lost a child to cancer. Everyone in the room had lost someone to cancer, and many were survivors. Of the 270 groups across the United States, there were 4,700 total in attendance; our group fit the median number almost exactly.
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. 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. As a member of CAC2, Jack’s Angels received a report from those members who attended the Washington DC Summit, which will be summarized toward the end of this overview.
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.
Our group of presenters, including one absentee presentation and one telecom presentation, were as follows: Louise Hyland, breast cancer survivor, author of “Learning to Cry”, international speaker, comedienne, and communications consultant; www.louise-hyland.com , Tracy Ryan founder of Cannakids, cannabis-centered clinical oncology group, and of Saving Sophie, an organization documenting the journey of her daughter living with brain cancer at www.savingsophie.org , Aryn Sieber, 9/11 1st-responder, Stage IVa Squamous Cell carcinoma survivor, founder of Cannacauses and the Compassionate Cannabis Community; www.cannacauses.org , Lisa Solis Delong, author of “Blood Brothers”, 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, co-chair of the Brain Tumor Developmental Therapeutics Committee (CNS-DVL) of the Children’s Oncology Group; co-founder of cc-TDI, Children’s 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 , Jaime King (brief absentee presentation) mother to Katie, Katherine the Brave, passed away 6/6/2016 from DIPG, a pediatric brain tumor responsible for 80% pediatric brain tumor deaths annually; www.katherinethebrave.org , and finally Janet Demeter, founder of Jack’s Angels Foundation for DIPG awareness and research, advocate and activist for children with cancer, host of “Childhood Cancer Talk Radio” on TogiNet.com; Janet’s son Jack died of DIPG in 2012; www.jacksangels.org .
Topics for consideration during the Summit included
- Putting the patient at the center of access and care
- Disparities in Cancer care
- Financing pediatric cures for cancer
- Supporting preventative health behaviors
- Imagining a fully connected health care continuum
- Solving the technical challenges to unleash the power of data
- Data: To what End?
- Strategies for integrating advances in cancer treatment into community care
- Recruiting and maintaining participants in clinical research
- Incentivizing breakthrough research discoveries in Cancer
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.
Collaboration, collaboration!—was the word which was most important to the discussion. 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. 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. Louise Hyland, breast cancer survivor and international speaker, stressed the importance of awareness, communication, and humor for personal healing. The psycho-social aspects of caring for cancer patients was a strong factor to all discussions, especially Robb Bolton’s contribution of fitness support with his company Cancer Fit. His experience demonstrated the positive effects in health and morale for survivors, and the importance of personal health and fitness for prevention.
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. 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. This was perhaps the most healing of the presentations given that day.
Dr. Charles Keller of the Children’s Cancer Therapy Development Institute and Children’s 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. 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. The only barrier to progress is inadequate funding.
Jaime King, mom to the recently deceased “Katherine the Brave” 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. 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.
In review of the Summit, all participants left with greater knowledge and awareness of resources available to them. One family attended with a daughter who had just been diagnosed with leukemia; meeting Lisa DeLong was especially helpful as they began their journey. Mrs. DeLong helped them connect with institutions and doctors who would be overseeing the child’s case.
Janet Demeter shared her experience with DIPG, the loss of her son, and the subsequent lessons that she learned about pediatric cancer research funding. She works for the day when parents no longer hear that there are no solutions for their child because “the numbers aren’t great enough for investors.”
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. 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. 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. This was the only shortcoming of the Summit, along with our inability to connect with the Vice President’s address to the Summit in Washington. However, the details of this were forwarded to the Hosts that morning in text to share with the participants.
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. 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. The Hosts continue to await feedback from their replies now 6 weeks henceforth.
Jack’s Angels Foundation received the CAC2 report of the Washington Summit on August 1, 2016, by CAC2 member David Frazer, who wrote:
“The Moonshot Summit was an event that gathered the principals within the oncology industry under the inspirational leadership of Vice President Biden. In my opinion, all politics aside, Mr. Biden portrayed the type of leadership necessary to conduct systematic change to defeat cancer. Historically, he has always been a champion for public health. The summit was based on collaboration and change, and Mr. Biden facilitated an effective initiative to drive those focus topics. 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.
- David Arons (National Brain Tumor Society)
- Beth Anne Baber (The Nicholas Conor Institute)
- Vickie Buenger (CAC2)
- Mary Beth Collins (CAC2)
- David Frazer (National Pediatric Cancer Foundation)
- Nancy Goodman (Kids v Cancer)
- Amanda Haddock (Dragon Master Foundation)
- Frank Kalman (Kids’ Cancer Research Foundation)
- Trish Kriger (Jeff Gordon Children’s Foundation)
- Liz Scott (Alex’s Lemonade Stand Foundation)
- Jeff Skolnick (CureSearch)
- Laura Thrall (CureSeach for Children’s Cancer)
… Alongside the work in the governmental channels, organizations of all sizes and missions will use the contacts they have made, the spirit of working together that embodies the Moonshot, and the shared vision of making a difference for cancer sufferers to find ways to breakdown silos, work together, and advance progress more quickly. This opportunity sounds a lot like what we do at CAC2.”
The full report can be found on a previous post: http://jacksangelsfoundation.com/?p=4756
Basically, Vicki Buenger and David Frazer voiced the urgent need for pediatric solutions as pediatric research does not receive much private sector support and pediatric cancer survivors face a lifetime of adverse health effects from toxic treatments not developed specifically for them.
The 4% was not discussed at the “Big Summit” on June 29, which was of primary interest to those concerned with childhood cancer research funding. Unfortunately, this was not of great surprise.