EndBrainCancer Initiative Announced Campaign for New Brain Cancer Clinical Trials in the Greater Puget Sound Area at its Education, Awareness & Action Dinner Press Release in PDF Format Press Release on PRNEWSWIRE National Distribution Network SEATTLE, June 13, 2019 /PRNewswire/ — The EndBrainCancer Initiative (EBCI) held its 8th Annual “Brains Matter” Dinner on May 15th raising $57,500 for its work. The “Hopeless to HOPE campaign” was announced. The goal of this multi-year campaign is to bring new clinical trials for brain cancer to the Greater Puget Sound area and offer more treatment options for brain cancer patients. Annick Desjardins, M.D., Duke researcher and neuro-oncologist, served as Keynote Speaker for the event. Dr. Desjardins is best known for her work with the re-engineered poliovirus to treat recurrent glioblastoma, rGBM, covered on the CBS News 60 Minutes program in 2015 and on a followup on a CBS News segment. Having received breakthrough status with the FDA in 2018 (supported by advocacy from EBCI), the treatment approach is being studied in sites around the United States. Dr. Desjardins noted the challenges and hopes with the research where, as with other immunotherapies, some patients respond while others do not. A major goal of this research is to explore […]
Summary: The 2019 NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors) and Brain Tumor Trials Collaborative (BTTC) Annual Meetings were held on April 29 and 30 at NIH in Bethesda, Maryland. The meetings were hosted by NCI’s Center for Cancer Research (CCR), Neuro-Oncology Branch, and attended by over 100 leaders, healthcare providers and researchers in neuro-oncology. The EndBrainCancer Initiative participated in these meetings with a representative taking part. NCI-CONNECT and BTTC 2019 Meetings June 3, 2019, by NCI-CONNECT Staff 2019 Meeting Attendees Credit: NCI-CONNECT Staff The 2019 NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors) and Brain Tumor Trials Collaborative (BTTC) Annual Meetings were held on April 29 and 30 at NIH in Bethesda, Maryland. The meetings were hosted by NCI’s Center for Cancer Research (CCR), Neuro-Oncology Branch, and attended by over 100 leaders, healthcare providers and researchers in neuro-oncology. The EndBrainCancer Initiative participated in these meetings with a representative taking part. The meetings brought attendees across neuro-oncology specialties, including clinical care and research, basic science and advocacy, together to discuss central nervous system (CNS) tumor clinical studies. Presentations and discussions included current studies and new clinical trial concepts that, in addition to measuring efficacy, incorporate patient quality of life and outcomes measures. The overall aim in each session was to ensure current and future […]
The EndBrainCancer Initiative Urges Immediate ACTION so Brain Cancer Patients are Not Excluded from Medicare Coverage for Genetic Profiling (Next Generation Sequencing-NGS) Press Release in PDF Format Press Release on PRNEWSWIRE National Distribution Network SEATTLE, May 9, 2019 /PRNewswire/ — In 2018, the Centers for Medicaid and Medicare Services (CMS) approved funding for specific diagnostic tests associated with genomic profiling, both for predictive usages and for analysis for cancer patients with recurrent, relapsed, refractory, metastatic, and/or advanced Stages III and IV cancers. The EndBrainCancer Initiative (EBCI) urgently seeks amendment or clarification of this regulation (Transmittal 215) to ensure that brain cancer patients are covered by the new medicare provision, and not excluded. Public comment closes on May 29. Two critical changes are needed. First, the rules as stated approve funding for patients with “Stage III or Stage IV” cancer. Brain Cancer is not designated in “stages” but is designated in “grades.” Grade III and Grade IV are comparable to Stage III and Stage IV with other cancers. We therefore advocate for change in language or confirmation in the explanatory memo so that brain cancer patients with the highest grade tumors—Grade III Anaplastic Astrocytoma (AA) and Grade IV Glioblastoma (GBM)—are covered […]
The EndBrainCancer Initiative to Feature Renowned Brain Cancer and Modified Poliovirus Duke Researcher, Dr. Annick Desjardins, as its Keynote Speaker for the 2019 Annual May “Brains Matter” ACTION Dinner as Advocacy is Underway Now to Bring this Treatment Option to the Seattle Area Press Release in PDF Format Press Release on PRNEWSWIRE National Distribution Network SEATTLE, May 9, 2019 /PRNewswire/ — The EndBrainCancer Initiative (EBCI) announced today that noted Duke researcher and neuro-oncologist, Annick Desjardins, M.D., will be the keynote speaker at its 8th annual “Brains Matter” Education, Awareness, and ACTION Dinner, to be held at the Bellevue Club on May 16th, from 5:30 p.m. to 8:30 p.m. Dr. Desjardins is best known for her work with the re-engineered poliovirus to treat recurrent glioblastoma, rGBM, presented on the CBS News 60 Minutes program in 2015 and on a follow-up CBS News segment in 2018. The original report featured Stephanie Lipscomb who was the first human to receive this treatment and who was cured. Dr. Desjardins keynoted EBCI’s 2016 “Brains Matter” event and Stephanie received the EndBrainCancer Initiative’s national HOPE Award presented by Novocure. “We are thrilled to welcome back Dr. Desjardins who will update us on the progress of the phase 1 & 2 nationwide […]
The End Brain Cancer Initiative connects brain tumor patients, caregivers and their families immediately to advanced treatments & clinical trials. Connecting to: 1) TOP Brain Tumor Neurosurgeons, Neuro-oncologists and Specialists in the U.S.; 2) Immunotherapy Vaccines; 3) 2nd, 3rd, 4th opinions; 4) Genomic Profiling/DNA Sequencing; 5) MGMT and Protein Testing
Our focus is survivorship. Everything we do and advocate is focused on that goal.
We are Here to Talk and Answer Questions: It begins with a conversation. We are here for you to listen and advise you if you have been diagnosed with brain cancer. Our care coordinators standing by to take any of your questions or concerns.
Personal Review of Your Case: Review your case with the End Brain Cancer Medical Advisory board
Ongoing Review: Personal review of your case and any MRI or pathology reports
Help You Network with Others: We put patients and caregivers in touch with other families and survivors who are going through or who have gone through the same thing
Ongoing Support: We help talk with patients and caregivers about how the disease can progress and answer questions
Connecting You Rapidly to Specialists and Cancer Centers: We connect patients with advanced brain tumor treatment centers and specialists. We get the patient medical records in front of other specialists to get first, second, third and fourth opinions.
Connecting you to Top Neurosurgeons: We connect patients to neurosurgeons who can and do operate even when the patient was told the tumor was inoperable.
Access to New & Promising Treatment Approaches: We provide specialists a platform to get in front of other professionals, patients, caregivers, families, etc. to talk about their research or the latest treatment they are able to offer.
Make Appointments: Make appointments and facilitate communication between local medical team and brain tumor specialists.
Insurance Help: Assist with insurance questions
Financial Advice & Resourcing: Find resources to help with financial concerns
Informing Patients: We provide you with the latest information on Brain Tumor Research, including free publications from Chris Elliott Fund and other Brain Tumor related organizations.
Supporting Family & Caregivers: We work with your family and caregivers to inform and support them
Empowering You to Access the Best Specialists: We Provide patients and caregivers the educational materials and questions to ask of their doctors to make sure they are being seen by a top specialist as well as what to demand from their neuro-surgeon, pathologist, radiologist and neuro-oncologist/Oncologist in order to be eligible for advanced treatments, clinical trials, DNA sequencing, genomic profiling, MGMT testing as well as protein testing. All this data supports research but with top specialists, this data helps the specialist identify the treatment option that the patient is most likely to respond to = Personalized Medicine based on the molecular profile of the tumor + makes Immunotherapy, Vaccines and other clinical trials available to P/C.
Helping You Become a Rockstar Advocate: We will walk with you as you yourself advocate for your own health and treatment. It can be a huge challenge to advocate for your own treatment with medical professionals. We are here to equip you to do just that.
Helping You Work with Insurance: We know how to work with your insurance. We will work on your behalf with insurance companies as well as partner with other advocacy organizations, such as Patient Advocate Foundation and Cancer Legal Resource Center, to meet your needs.
