National Press Release: The EndBrainCancer InitiativeChampions Changes to Standards of Care at its 7th Annual Brains Matter Dinner
SEATTLE (PRWEB) MAY 30, 2018
On May 17th the EndBrainCancer Initiative’s 7th annual Brains Matter & Igniting Hope Celebration, Awareness and Fundraising Dinner was held in Bellevue, Washington near Seattle. In attendance were many brain cancer patients, survivors and their family members as well as individuals representing key segments of the brain cancer research and treatment community. The dinner event generated over $75,000 toward the EndBrainCancer InitiativeI’s spring campaign (still going) with its goal of $100,000. The organization, originally formed as The Chris Elliott Fund, also marked its 16th anniversary.
“Our theme tonight is ‘Igniting HOPE,’ stated Dellann Elliott Mydland, Co-founder and President of The EndBrainCancer Initiative (EBCI) in her introduction. “At the EBCI, theHOPE we offer brain cancer patients is not just positive thinking or therapeutic technique per se, but rather real options based in science, awareness of new treatments, access to Centers of Excellence, and connections to promising clinical trials. As an organization we represent the patient’s voice in demanding changes to national Standards of Care so all brain cancer patients gain the same critical awareness and access to second opinions and options as well as promising treatments. Genomics and immunotherapy are such treatment areas.”
The Dinner’s keynote speaker was Duane A. Mitchell, M.D., Ph.D., world-renowned expert in using immunotherapy in the treatment of brain cancer. Dr. Mitchell is Co-Director of the Preston A. Wells Jr. Center for Brain Tumor Therapy and Director of the University of Florida Brain Tumor Immunotherapy Program. Dr. Mitchell introduced the key findings he and his team (as well as others in the field) have discovered in how the mechanisms that already exist in our body can be utilized in various ways to fight brain cancer and prevent cancers from recurring. He highlighted the role of cytotoxic T-Cells whose purpose is to individually identify cancer cells delivering cytotoxic proteins to destroy those cells while not negatively impacting healthy cells. “Amazingly,” Mitchell noted, “We are finding specific keys to treating brain cancer inside the patients themselves.”
The American Society of Clinical Oncology (ASCO) named immunotherapy 2.0 as the advance of the year in 2017 and now immunotherapy is a standard treatment option for people across a broad range of cancers. However, immunotherapy is still not a standard treatment option for brain cancer patients. The EndBrainCancer Initiative is currently focusing much of its education, awareness and outreach efforts on the role of immunotherapy in treating brain cancer.
Dr. Mitchell was introduced by Sherri Millis, Senior Manager of Clinical Collaboration from keynote sponsor Foundation Medicine, who also explained her company’s work in genomic profiling and building a common data set for research and treatment. Dellann Elliott Mydland further commented, “Genomic profiling and related precision and personalized medicine is another key plank in emerging brain cancer approaches. At the EBCI, we actively advocate for patients to receive personalized treatment plans based on the emerging genomic data sets being developed.”
The EndBrainCancer Initiative currently works with 900 patients and families per year with a focus on fueling research by placing patients in clinical trials. “Our approach,” stated Mydland in her address, “is what we call ‘directive advocacy.’ Brain cancer creates uniquely challenging problems. Patients and their families suffer from greater dependency and hopelessness than other cancer patients. EBCI helps patients manage their interactions with doctors, manage their emotional crisis, and help them find the right treatment options and/or clinical trials.” Dr. Mitchell, a member of EBCI’s medical advisory board, added in his address, “I applaud the EBCI. The work you are doing in in connecting patients with specialists, innovative drugs and therapies, and research studies is absolutely vital. You are the GPS of brain cancer.”
The EndBrainCancer Initiative worked in such a way with Mr. Ken Whitley of North Carolina who was on hand at the event. Ken was diagnosed with a brain tumor on Super Bowl Sunday in February 2017. In the evening’s “mission moment,” Ken credited the EBCI team with providing guidance and insight that changed his approach to treatment as well as connecting him with key doctors offering a wide variety of treatment options. “EBCI gave me HOPE. I was lost and did not know which way to turn. With their help I got activated.” (Ken’s Impact Story)
After not qualifying for a number of clinical trials, Ken enrolled last September in a clinical trial with Dr. Allan Friedman of Duke University utilizing a re-engineered, tumor-seeking bacteria. Recently, Ken got the results of his latest MRI—“no measurable change in the tumor” with the three previous scans showing tumor reduction and dissipation.
Ken Whitley was presented with the 2018 National HOPE Award, sponsored by Novocure, to the brain cancer patient who embodies HOPE in facing this disease. In receiving his award, Ken stated to the brain cancer patients in the audience and beyond, “DON’T GIVE UP!! THERE IS HOPE! Put one foot in front of the other; keep moving forward. Define and pursue your goals while putting your trust in God. Doctors can treat. They can’t heal. God does, however, work through doctors, scientists and the EndBrainCancer Initiative’s team. Don’t give up!”
The evening event was supported by a number of industry partners and research institutions in the brain cancer arena as well as other regional companies. In her welcoming remarks, Nikki Nepomuceno, Clinical Research Associate at corporate partner Orbus Therapeutics, highlighted her firm’s partnership with the EBCI stressing the value of connecting brain cancer patients to clinical trials. Dellann Elliott Mydland (whose late husband, Chris Elliott, passed away from brain cancer in 2002) further commented: “This event’s wide base of support is indicative of what we are trying to achieve broadly at the EBCI. Brain cancer is such a menace and insidious disease, it will literally take all of us working together to beat it. Our goal is survivorship now and cure in our lifetime. If we are to achieve that, we must embark on this fight in a brand new way, where we forge breakthrough collaborations between researchers, the medical community, pharmaceutical companies, treatment Centers of Excellence, government, and most importantly, the patients themselves. I am grateful for our partners and sponsors in supporting our initiative to truly put that common goal first.”
The EndBrainCancer Initiative would like to thank its corporate partners and event sponsors who have made this event possible (Brains Matter Dinner Event Page): Keynote Sponsor, Foundation Medicine and Educational and Event Sponsors OncLive, CURE Magazine, Oncology Nursing News, Orbus Therapeutics, STELLAR Trial, Celgene, Nativis, glassybaby, University of Florida Health, The Preston A. Wells Center for Brain Tumor Therapy, The Preston Robert Tisch Brain Tumor Center at Duke, Synaptive Medical, JMS Construction, Brotherton Cadillac, Hatchbuck , Tito’s Handmade Vodka, and Wrecking Ball Demolition. The EBCI is seeking to engage eight additional industry Corporate Partners to help fuel research, increase patient outcomes and provide IMMEDIATE ACCESS to specialists, to advanced treatments, and to clinical trials.
The EBCI is seeking to engage eight additional industry Corporate Partners to help fuel research, increase patient outcomes and provide IMMEDIATE ACCESS to specialists, to advanced treatments, and to clinical trials.
About the EndBrainCancer Initiative
The EndBrainCancer Initiative (EBCI, formerly the Chris Elliott Fund) is a national brain cancer and brain tumor patient advocacy organization and national 501(c) 3 social enterprise with offices in Redmond, Washington. Established in 2002 and now celebrating 16 years of service, EBCI is committed to finding a cure for brain cancer and bringing HOPE to the lives of patients and their families through its three programs:
- “Direct Connect” Patient Services Program
- Brain Tumor Disease Education, Awareness, and Outreach Program
- Brain Tumor Patient Advocacy and Access
Since its founding, EBCI has helped thousands of patients, caregivers, and their families and has become a credible and trusted resource at all levels in the brain cancer treatment community from patients to research institutions to pharmaceutical and regulatory entities. EBCI also participates as the “Patient Voice” in clinical trial design. Founder and President, Dellann Elliott Mydland has been published in CNS Oncology.
The organization and its staff support 900+ patients and caregivers free of charge annually through the Direct Connect Program, and provide Education/Awareness/Outreach to over 8.7 million annually, including members of the Brain Tumor Community. EBCI is a member of the American Society of Clinical Oncology (ASCO), Society for Neuro-Oncology (SNO), American Association of Neuroscience Nurses, American Association for Cancer Research, and Life Sciences Washington, among other organizations.
If we can help, please contact us at WeCare@EndBrainCancer.org or 425.444.2215.
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About Dr. Duane Mitchell
Duane Mitchell, M.D., Ph.D. is a world-renowned expert in translational research and immunotherapy. He is Co-Director of the Preston A. Wells Jr. Center for Brain Tumor Therapy at the University of Florida. Dr. Mitchell received his medical degree and doctorate degree in immunology from Duke University. Dr. Mitchell now leads a comprehensive brain tumor program at the University of Florida focused on translational research. He also currently serves as a chartered member of the NIH study section on Cancer Immunopathology and Immunotherapy, Chair of the NCI Pediatric Brain Tumor Consortium Immunotherapy Committee, and member of the NCI Brain Malignancy Steering Committee Working Group. Dr. Mitchell has more than 40 refereed journal publications, 15 textbook chapters and scientific reviews, and is inventor on five United States patents on findings from his oncological research.
More about Dr. Mitchell and his work can be found on his University of Florida Bio Page.