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Wishing you and yours the most wonderful and blessed holiday season ever!
Hello. It is unbelievable that the Chris Elliott Fund DBA End Brain Cancer Initiative (EBCI) is turning 20 years old THIS year! I know this is a true reality but between you and I, how can that be? I am very proud of the work and the mission that EBCI has addressed head on and has been able to meet some of the unmet need in this rare disease advocacy space on behalf of the brain tumor community. Beyond Proud and truthfully, a bit humbled as well. Our 20th Year Anniversary just kind of snuck up on me! You know, when your busy developing disease education campaigns, materials, meetings, initiatives, speaking opportunities, articles, running a business that happens to be a 501 (c) non-profit, etc. and truly grounded in the mission and “the work”, you just don’t think about milestones such as this one. Can it really be 20 years since my late husband, Christopher Stewart Elliott, and I founded this organization with the goal of updating Standard of Care (SOC) for patients with brain cancer to include NOT actually having surgery within 72-hours of a mass being diagnosed so that specialists can be discovered and therefore, part of the […]
This year is all about the reality of running a 501(c)3 non-profit Advocacy organization from my perspective that directly and head-on meets the large unmet need that people, patients, caregivers and their family members will likely experience at the time of diagnosis and at the time or times of a recurrent or multiple recurrent brain tumors/brain cancer – Like all of you, I NEVER dreamed that my family or I would ever be “touched” by a brain cancer diagnosis. You all know what I’m talking about when I say “it changes you forever”, which is the BLOG post that I will work on next week, so please watch for it. What I also know, that for me, after going through a 22-month struggle to TRY to save my husband’s life and our children’s father from GBM and despite my VERY BEST efforts, GBM won in taking him away from us/our entire family. What a devasting loss to all, society and especially to our children and to me. I remember thinking often during our 22-month battle with brain cancer, that if the brain cancer ever wins and takes my husband from us, the cancer will win…….BUT, I also felt and knew, […]
I am proud to announce our new BLOG Post Series, titled “LIVING Your Legend” in honor of celebrating 20 years of living the mission. Today, while going through old patient and caregiver files dating all the way back to 2002, I honestly had a moment, actually more than a moment – have pretty much taken the entire day, to reflect. “Reflecting” is not something that I get a chance to do often as the workload that comes from starting a 501 (c)3 non-profit Advocacy Organization is heavy, listing to patients and caregivers needs is vital and very difficult all at the same time and having the responsibility of raising the funds necessary to provide our disease education, awareness, outreach efforts, programs, campaigns/initiatives, mission, services and IMPACT, is beyond EXHAUSTING. Usually, I am unable to spend even a second reflecting on the powerful work and lasting impact that the organization my late husband, Chris Elliott, and I started in 2002, because the need is so great BUT as the Chris Elliott Fund, now known as the End Brain Cancer Initiative (EBCI) prepares to celebrate 20 years of passion, hard work, so many patient and caregiver interactions and stories, the amazing opportunities […]
This month’s CURE MAG Cover Tip brought to you by the End Brain Cancer Initiative (EBCI), www.EndBrainCancer.org, and through our patient advocacy and disease education partnership with CURE, focuses on turning Glioblastoma Multiforme (GBM) from a deadly disease into a chronic managed disease through turning GBM patients into cancer survivors through metabolic targeting of GBM through Aminolevulinic Acid (ALA) Sonodynamic Therapy (SDT). ALA and SDT is created through the union of two FDA-approved technologies: ALA tumor targeting and focused ultrasound (FUS). ALA SDT uses am MRI-guided focused ultrasound (MRGFUS) device together with a drug, ALA, to provide a cancer-specific therapeutic effect. To learn more about this approach, please visit: https://sonalasense.com/for-patients/ . SonALAsense is now collaborating with the Ivy Brain Tumor Center at Barrow Neurological Institute in Phoenix, AZ, on carrying out the first human clinical trials using ALA SDT. One trial is focused on adult patients with recurrent GBM (rGBM) and the other trial is focused on pediatric patients with diffuse intrinsic pontine gliomas. These trials are set to begin in early 2022. For more information on this study or to inquire about patient participation, please contact Phase 0 Navigator at: http://www.clinicaltrials.gov/ct2/show/NCT04559685, Research@ivybraintumorcenter.org, or at 602-406-8605 The ALA and SDT […]
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.
