standard-title Living Your Legend: Blog Here you will get the latest on what is happening with the EBC Initiative.
Living Your Legend: Blog
Here you will get the latest on what is happening with the EBC Initiative.
Living Your Legend: Blog
20th Year Anniversary Milestone: Announcing EBCI’s Disease Education, Awareness & Outreach Application
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, [email protected], or at 602-406-8605 The ALA and SDT […]
Abstract: Navigating care for patients with cancer can be overwhelming considering the multiple specialists they encounter and the numerous decisions they must make. For patients with glioblastoma (GBM), management is further complicated by a poor prognosis, feelings of isolation, urgency to treat, and cognitive decline associated with this rare and progressive disease. For these reasons, it is imperative that shared decision-making (SDM) be integrated into standard practice to ensure that the risks and benefits of all treatments are discussed and weighed with the patient’s expectations and goals in mind. In this manuscript, the importance of SDM in GBM and the potential benefits to the practice and patient are discussed from the unique perspective of advocacy leaders. Their insights from interactions with patients and caregivers provide a template for empowering patients, improving patient-physician communication and understanding, and reducing patient and caregiver anxieties. Ultimately, increased SDM may lead to a better quality of life and improved treatment outcomes. Keywords: patient advocacy, advocacy organizations, patient-centered care, brain tumor, oncolo Read The Full Published Article Here: Shared Decision Making Article
As a proud member of ASCO (American Society of Clinical Oncology), I am consistently impressed with the information they provide. They recently held their Annual Event #ASCO21 and I wanted to take the time to provide some of the incredible information and data that resulted from that meeting. While the information provided is not specifically related to brain cancer, it is incredibly valuable and exciting information for the cancer community at large. New Standard of Care for Select Patients With Early Breast Cancer One year of adjuvant olaparib following the completion of standard therapy improved both invasive and distant disease-free survival by 9% and 7%, respectively, in patients with high-risk, HER2-negative, early-stage breast cancer harboring germline BRCA mutations in the phase III OlympiA trial. Olaparib conferred these benefits without causing a marked increase in toxicity or negatively affecting patient quality of life. READ MORE Reduction in the Risk of Disease Progression by 48% in Patients with Recurrent or Metastatic Nasopharyngeal Carcinoma The addition of toripalimab to first-line gemcitabine/cisplatin followed by toripalimab maintenance reduced the risk of disease progression by 48% in patients with recurrent or metastatic nasopharyngeal carcinoma, meeting the primary endpoint of the phase III JUPITER-02 trial. First-line toripalimab […]
Expanded Use of Innovative Brain Tumor Treatment Exemplified in GT Medical Technologies’ 2020 GammaTile® Therapy
To all our Supporters, Friends and Colleagues and especially to the Patients and Caregivers we serve and to the Healthcare Workers who tirelessly work on behalf of all of us! First of all, I want to take this opportunity to mark the passing of a momentous year and wish everyone a much better 2021. It certainly has been quite the ride! I want to start off 2021 by sharing exciting news from Corporate Partner GT Medical who offer a truly groundbreaking treatment for those undergoing surgery for their brain tumor in the form of safe and effective surgically targeted radiation delivered right to the tumor site. I personally believe that GammaTile Therapy is a game changer for patients with malignant brain tumors and would like to personally congratulate those centers achieving ELITE status in 2020: Memorial Sloan Kettering Cancer Center University of Minnesota M Health Fairview HonorHealth Scottsdale Osborn Medical Center NorthShore University HealthSystem Mayfield Brain & Spine Read the full press release HERE. I am looking for these numbers to increase exponentially in 2021. Because it means that far more patients with brain tumors will start off their journey with radiation that’s targeted to their tumor and is much less debilitating. […]
Hi guys! I am extremely excited to share what I believe is groundbreaking news in the battle against brain cancer and other solid tumors. In this case, it’s a response-prediction test which improves outcomes by testing live cancer cells against a number of potential therapies to demonstrate which ones will be most effective in killing the tumor cells. Results are available in just seven days and provide oncologists with evidence-based guidelines in choosing which drug therapy to use. This means that instead of randomly picking a drug from many possibilities, oncologists are able select the drug that is most likely be of help. Read the full press release HERE. Results to date are based on an extremely small sample of recurrent GBM patients and are promising, doubling median progression free survival time from 4 months to 7.9 months. KIYATEC’s test results informed two of the seven patients’ successful treatment with dabrafenib, a targeted agent. Neither had a typically associated genetic mutation, demonstrating that the test can uncover effective drug options that would have normally been missed. KIYATEC’s test is currently only available in clinical trials (see https://clinicaltrials.gov/ct2/show/NCT03561207 for details). They are now accepting patients with newly diagnosed or recurrent malignant […]
Hi guys! One of my most favorite things to do under my leadership of the EndBrainCancer Initiative is to talk directly to patients with brain cancer and to hear first hand, “their story” and to “see” with my own eyes as well as to “hear” with my own ears how they IMPACT others simply by the way they are living with and fighting their brain tumor. I see such amazing Courage and Inspiration every day from patients with brain cancer and now, I want to meet them and share their stories with all of you and pick one of them to honor at this year’s EBCI National “HOPE” Award. Due to COVID-19, our National “HOPE” Award, sponsored by www.Novocure.com, was not presented in May like it usually is during our annual “Brains Matter” Education, Awareness & ACTION Event as we had to reschedule this event to July 30th. Now, also due to COVID-19, this event is now cancelled but NOT our National “HOPE” Award Initiative! WE ARE GOING FORWARD WITH THIS AWARD COME LOW OR HIGH WATER! We are seeking nominations for this award and now, with the launch of my weekly “Having a Say” Zoom Video Meeting Series, I […]
Today, May 31, 2020, the very last day of #BTAM month, I find myself reflecting on many things and just looked through the photos from last year’s Bellingham Brain Cancer WALK (BBCW) , Presenting Sponsor: Novocure (www.novocure.com) and am smiling and crying at the same time. Just look at these photos! What a super cool day it was! View Event Photos Here: https://www.facebook.com/braincancerwalkbellingham/ Let’s first talk about Hannah. The late Hannah Dashiell was (and, in my mind, is, as she STILL INSPIRES ME) an amazing young women from Bellingham, WA who wanted to honor her grandfather, Jerry Jerowski, who had died from brain cancer in 2007, by creating a brain tumor awareness walk during the month of May, National Brain Tumor Awareness Month, #BTAM, and chose to create this WALK as her High School Senior Class Project. Hannah was and is a bright light for her family, her friends, the entire EndBrainCancer Initiative (EBCI) team and for the brain tumor community and general public that we have been lucky enough to share Hannah’s story with. Thank you Hannah for your desire to make a difference in this world, INSPIRE others, including me and look what you started! Thank you Hannah. […]
Today, it is May 17, 2020 and I am spending my day reflecting on the national brain tumor community. Specifically, I am also spending a lot of time over the last several weeks, amongst COVID-19, reflecting on the my late husband’s brain cancer journey and the last 18 years of co-founding and running the Chris Elliott Fund, now DBA EndBrainCancer Initiative. Geez, I cannot believe it has been 18 years since Chris and I established the then “Chris Elliott Fund” with the goal of not only funding very KEY research related to genomics and targeted therapy for Glioblastoma Multiforme, also known as GBM brain cancer but also for the purpose of providing IMMEDIATE ACCESS for other brain tumor/brain cancer patients to brain cancer specialists, such as world renown brain tumor neuro-surgeons, such as Dr. Mitch Berger, IMMEDIATE ACCESS to Brain Tumor Centers noted for their Excellence as well as to specialists that are neuro-oncologists in the brain cancer space as well as to Principal Investigators involved in brain cancer clinical trials. I am beyond proud of what we have accomplished with my late husband’s request, “Do Something About this Disease”. Gosh, in many ways, I feel like we have just […]
WEBINAR! COVID-19 & BRAIN CANCER! Important information on how COVID-19 affects Brain Cancer (and other cancer) patients. Join Al Musella of the Musella Foundation and Dr. Eric T. Wong, Brain Tumor Center & Neuro-Oncology Unit, Beth Israel Deaconess Medical Center, Dana Farber/Harvard Cancer Center and Harvard Medical School.
Book Launches with Call for Stories: Author and Advocate Dellann Elliott Mydland Calls for Stories Where Tragedy was Transformed for Good to Help Others
Book Launches with Call for Stories: Author and Advocate Dellann Elliott Mydland Calls for Stories Where Tragedy was Transformed for Good to Help Others SEATTLE, Aug. 27, 2019 /PRNewswire/ — Dellann Elliott Mydland, co-founder of the EndBrainCancer Initiative (EBCI), announces a new book she is writing to tell her story, and invites members of the public to share stories of tragedy in life where personal tragedy was transformed into actions and impact for good to help others (Learn More). Press Release in PDF Format Press Release on PRNewswire In 2002, Dellann lost her late husband, Chris Elliott, to brain cancer. The EndBrainCancer Initiative / Chris Elliott Fund (EBCI-CEF) was born out of that tragedy (Read Chris Elliott’s story). Since then Dellann’s life has been singularly defined and deeply motivated by that tragic experience, as for 17 years she and the organization have been on the front lines directly helping brain cancer patients and their families and advocating nationally for key public policy changes, drug/device/diagnostic approvals, and new research to benefit brain cancer patients. “I would never wish this journey on anyone,” Dellann explained, “But now that I’m on the other side, I’m grateful for the opportunity to give back. I […]
Another Advocacy Win for Patients: Medicare Finalizes Coverage for Some CAR T-Cell Therapies On August 7, the Centers for Medicare & Medicaid Services (CMS) finalized the decision to cover FDA-approved Chimeric Antigen Receptor T-cell, or “CAR T-cell” therapy, which is a form of cancer treatment that uses a patient’s own genetically-modified immune cells to fight disease. FDA-approved CAR T-cell therapies are approved to treat some people with specific types of cancer – certain types of non-Hodgkin lymphoma and B-cell precursor acute lymphoblastic leukemia. CMS approved the NCD (National Coverage Decision) without some of the requirements that had some providers concerned. With the decision, it establishes coverage that increases reimbursement, approves usage in certain FDA-approved healthcare facilities other than hospitals, reduces some reporting requirements that may have discouraged adoption, and supports ongoing monitoring and collaboration in the future between CMS, the FDA, and the NCI. “This decision is great news,” commented Dellann Elliott Mydland, President and CEO of the EndBrainCancer Initiative. “We applaud the CMS for moving this forward and providing expanded coverage for these promising treatments. The EBCI is excited about the research for CAR T-Cell Therapy to treat brain cancer and we hope that research will progresses to the […]
The EndBrainCancer Initiative Urges Support for New FDA Clinical Trial Diversity Guidelines and Proposes Key Amendments
The EndBrainCancer Initiative Urges Support for New FDA Clinical Trial Diversity Guidelines and Proposes Key Amendments Proposed Changes Offer Patients with Brain Cancer and Other Rare Diseases Access to Advocacy Oriented “Patient Partner Navigation Services” Press Release in PDF Format Press Release on PRNEWSWIRE National Distribution Network SEATTLE, Aug. 1, 2019 /PRNewswire/ — The EndBrainCancer Initiative (EBCI) urges support for the new guidelines proposed by the FDA entitled “Enhancing the Diversity of Clinical Trial Populations – Eligibility Criteria, Enrollment Practices, and Trial Designs Guidance for Industry.” With the public comment period ending on August 6th, the EBCI also proposes changes to the guidelines that would ensure that brain cancer patients and other rare disease patients are offered the opportunity to interact with advocacy oriented outside “Patient Partners Navigation Services” at the time of diagnosis prior to surgery and as a regular part of clinical trial participation to increase inclusion, diversity, and enrollment in support of the growth goals of the guidelines (EBCI Letter and Public Comment). For those that don’t know, clinical trials are carried out as part of medical research studies that look into medical, surgical, or behavioral intervention. These clinical trials have to follow very strict guidelines […]
The EndBrainCancer Initiative Calls on All Americans to Recognize and Support the Inaugural National Glioblastoma Awareness Day on July 17th
The EndBrainCancer Initiative Calls on All Americans to Recognize and Support the Inaugural National Glioblastoma Awareness Day on July 17th Press Release in PDF Format Press Release on PRNEWSWIRE National Distribution Network SEATTLE, July 15, 2019 /PRNewswire/ — In June, the U.S. Senate took swift action and passed Senate Resolution 245 by unanimous consent. July 17, 2019 is officially “Glioblastoma Awareness Day” nationally (#GBMDay)! Glioblastoma (GBM) is the most common and deadly form of brain cancer. The EndBrainCancer Initiative urges all Americans to recognize and act in support of this inaugural GBM Awareness Day. The resolution was led by Senator Lindsey Graham (R-SC) and received bipartisan cosponsorship from Senators Edward Markey (D-MA), Elizabeth Warren (D-MA), Kyrsten Sinema (D-AZ), Martha McSally (R-AZ) and Senate Majority Leader Mitch McConnell (R-KY). The EndBrainCancer Initiative (EBCI) proudly endorsed and helped to advocate for passage of this resolution, working with the National Brain Tumor Society (NBTS) and other advocacy and research organizations/foundations such as the American Brain Tumor Association (ABTA), International Brain Tumor Alliance (IBTA), Society for Neuro-Oncology (SNO), Glioblastoma Foundation, Ivy Foundation, Musella Foundation, and others. The U.S. Senate was directly impacted by GBM as Senator Graham publicly commented, “Glioblastoma is a devastating […]
Thank you so much for your interest in submitting your story for my collaborative book. First, let me tell you more about myself and my mission and purpose for this book. In my daily life, I am the co-founder, President and Chair of the EndBrainCancer Initiative (formerly the Chris Elliott Fund) www.EndBrainCancer.org. My late husband, Chris Elliott, and I formed this organization 17 years ago to specifically assist brain tumor/brain cancer and patients with brain mets to work with specialists, encourage them to have their tumor tissue saved and comprehensive genomic testing done on that tissue to inform and increase effective personalized treatment options as well as to improve health policy and increase immediate access to effective treatment options. It has been a rough road to financially support all of these efforts via programs and services that are free to the patient/caregiver and the families we serve as well as amazingly empowering to know you are helping others as well as changing policy for all cancer patients. Fast Forward: While editing and writing a chapter for the bestselling book by author and life coach Lisa Reck, Breaking Through the Storm, I had one of those “aaha” moments and realized that perhaps the […]
EndBrainCancer Initiative Announced Campaign for New Brain Cancer Clinical Trials in the Greater Puget Sound Area at its Education, Awareness & Action Dinner
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 […]
The EndBrainCancer Initiative Urges Immediate ACTION so Brain Cancer Patients are Not Excluded from Medicare Coverage for Genetic Profiling (Next Generation Sequencing-NGS)
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
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 […]
Patients, Survivors, Friends, and Partners Celebrate The EndBrainCancer Initiative’s GBM Patient & TOGETHER Day
Patients, Survivors, Friends, and Partners Celebrate The EndBrainCancer Initiative’s GBM Patient & TOGETHER Day A unique event in Greater Puget Sound/Seattle, Washington celebrated and uplifted brain cancer patients and survivors providing inspiration, food and fellowship, massages, gifts, photography sessions, and more. Press Release in PDF Format Press Release on PRWEB National Distribution Network Seattle, WA – April 2, 2019 The EndBrainCancer Initiative Initiative recently hosted its first ever GBM Patient & TOGETHER Day on Friday, March 15th at the Bellevue Club in Bellevue, Washington. EBCI and its sponsors and partners hosted current and past brain cancer patients, survivors, caregivers, and families in a special event focused on uplifting and inspiring those impacted by brain tumors and brain cancer. The afternoon program flowed with opportunities for participants to dine and enjoy special services such as massages, makeovers, and photography sessions and featured a variety of speakers who shared inspirational insights through stories of their personal experiences with brain cancer. As a new event initiative, GBM Patient & TOGETHER Day enjoyed both local and national underwriting support. National sponsors included Presenting Sponsor, AbbVie, and Silver Advocacy Sponsor Novocure. Local sponsors included The Seattle Cancer Care Alliance (SCCA) Proton Therapy Center, Seattle Children’s […]
GBM Patient & TOGETHER Day to Honor and Uplift Brain Cancer Patients on Friday, March 15th In collaboration with regional and national partners, Seattle-based EndBrainCancer Initiative (EBCI) will host this inaugural afternoon event for brain cancer patients, caregivers, and families. Press Release in PDF Format Press Release on PRWEB National Distribution Network Seattle, WA – March 14, 2019 The EndBrainCancer Initiative is hosting its first ever GBM Patient & TOGETHER Day on Friday, March 15th at the Bellevue Club in Bellevue, Washington. GBM is short for “Glioblastoma” which is the most common form of brain cancer, a stage 4 cancer. EBCI and its sponsors and partners invite current and past brain cancer patients, survivors, caregivers, and families to a special event focused on uplifting and inspiring those impacted by brain cancer. “GBM Patient and TOGETHER Day is an opportunity for people to stand with the brain cancer patients in our community and uplift them,” says EBCI President Dellann Elliott Mydland. “It’s a day to give back to those among us stricken and impacted by this terrible disease. We have planned a wonderful day for patients, caregivers and families to experience love, hope, education, and empowerment.” The event enjoys both local and […]
With Condolences to the McCain Family, The End Brain Cancer Initiative Calls for New Access and Treatment Options for Brain Cancer Patients & Changes to Standard of Care
With Condolences to the McCain Family, The End Brain Cancer Initiative Calls for New Access and Treatment Options for Brain Cancer Patients & Changes to Standard of Care The End Brain Cancer Initiative (EBCI) joins other organizations to honor Senator McCain’s life and fight against brain cancer. EBCI calls for National Concerted Action that Offers New Access and Treatment Availability for Brain Cancer Patients and Critical Changes to WHO & NCCN Guidelines Leading to Updated Standard of Care and Clinical Practices. 2018 Senator McCain Condolences Press Release on PRWEB 2018 Senator McCain Condolences Press Release (PDF) FOR IMMEDIATE RELEASE Media Contact: Dellann Elliott Mydland SEATTLE – AUGUST 27, 2018 – Joining with other sister charities and fellow citizens overall, The End Brain Cancer Initiative (EBCI), formerly the Chris Elliott Fund, extends its condolences to the McCain family and respectfully honors Senator John McCain’s passing and legacy of service to our country. Senator McCain faced a disease that tragically afflicts and kills many thousands of Americans every year. As an organization, EBCI is dedicated to increasing survivorship now and finding a cure for brain cancer in our lifetime. When you hear of famous people dealing with a brain cancer diagnosis, it […]
The EndBrainCancer Initiative Received CITI Certification Becoming the First Brain Tumor Patient Advocacy Organization Listed as a Nationally-Recognized Recruiting Site
The EndBrainCancer Initiative Receives CITI Certification Becoming the First Brain Tumor Patient Advocacy Organization Listed as a Nationally-Recognized Recruiting Site FOR IMMEDIATE RELEASE Media Contact: Dellann Elliott Mydland Prestigious certification strengthens Seattle-based EBCI’s role in the brain tumor advocacy space directly connecting patients to Centers of Excellence, cutting edge treatments & development of promising clinical trials Seattle, WA – August 2, 2018 – The EndBrainCancer Initiative (EBCI, formerly the Chris Elliott Fund) received CITI certification to recruit caregivers to participate in brain cancer caregiver and patient clinical trials at the Pacific Neuroscience Institute and John Wayne Cancer Institute in conjunction with Providence Health Services of Southern California. 2018 EBCI CITI Press Release 08.02.18_Final_Distributed_II At the Pacific Neuroscience Institute and John Wayne Cancer Institute, EBCI is collaborating with Dr. Santosh Kesari, Chair and Professor, Department of Translational Neurosciences and Neurotherapeutics, and Director, Neuro-oncology. Dr. Kesari’s clinical team conducts leading-edge clinical trials of immunotherapy, stem cells and biomarker-based therapies. Dr. Kesari says of this partnership with EBCI: “We enlisted the support of EBCI for patient recruitment because of their expertise and proven effectiveness, and especially because of the trust they have earned with patients as an advocacy organization. For years EBCI has been […]
National Press Release: The EndBrainCancer Initiative Champions Changes to Standards of Care at its 7th Annual Brains Matter Dinner
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 […]
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Our Founder, Dellann Elliott Mydland is attending today’s 3rd Annual Innovative Approaches to Brain Tumor Management Course. She will be speaking with leading experts in the field to discuss the future of brain tumor management including the progress in personalized medicine and implications of immunotherapy in specializing treatment. The design is to focus on the future of brain tumor therapy with the goal of improving treatment response rates, outcomes, and overall patient care. Some of the amazing specialists a.k.a “Brain Tumor Rockstars” at the event include: Stay tuned for updates on the results of this important meeting and to hear about our work with Dr. Kesari of the John Wayne Institute regarding developing new clinical trials for GBM patients! Your EBCI Team!
HAPPY NEW YEAR EVERYONE! It has been a privilege for the EndBrainCancer Initiative (EBCI) team and me to be of service to you in 2017 and I am SO excited for 2018! All of us at the EndBrainCancer Initiative (EBCI) are focused in 2018 on improving patient outcomes and encouraging and increasing IMPACT in 2018 and this is how we will accomplish these goals: Continue to put into place more “Corporate Partners” within biotech, pharma, device and diagnostic companies, which allows EBCI to educate the general public as well as the brain tumor community on new research, new clinical trials/studies and advanced treatments and to incorporate this information into our Education/Awareness/Outreach program, our daily discussions with patients/caregivers and families as well as incorporate this information into our “Direct Connect” program. In 2018, we hope to be able to hire a full time seasoned Executive Director so that I can get out into the field to identify and then to solidify 8 more Corporate Partner contracts as well spend more time in DC advocating for FDA approval of new treatments for brain cancer as well as work on advocacy related to the proper coding and reimbursement/coverage of these new treatments in […]
Many of you know the work of the EndBrainCancer Initiative (formerly the Chris Elliott Fund) and are familiar with our very active one-on-one personalized “Direct Connect” services which include access to specialists, novel treatment options, and a plethora of clinical trials. In addition, you are likely aware of our large, ever-evolving Education, Awareness, & Outreach Programs; however, it is our “Advocacy” programs that I want to share about today. The word “Advocacy” is a big word and can mean just about anything you want to apply it to. Today, I am using the word “Advocacy” to refer to my work as it relates to clinical trial development for GBM and rGBM patients. For the past year and half, I have been on the VIGILANT Steering Committee providing a “Patient Voice” for the VIGILANT Trial. I am proud to announce that this work has just been published in CNS Oncology and is now available to read here on Future Medicine. I am also proud to tell you that EBCI and I are currently working on the development of two more clinical trials for brain cancer patients. By design, most of you are not actually aware of our “Advocacy” programs. The EndBrainCancer Initiative […]
With a HUGE shout out to our sponsors and all of the participants who made this years event, nothing short of EPIC, enjoy the slideshow! ~ With Heartfelt Thanks…your EBCI Team!
Megan’s father died of brain cancer just 8 short months after being diagnosed. Megan was determined to help families who suffer from this terrible disease and decided to start making and selling cards to raise money for her dad’s doctor, Dr. Cobbs, to help “further his research” into this devastating disease. Way to go Megan!!! https://meganscardsforcancer.com
With each new diagnosis of glioblastoma, comes shock, disbelief, and turmoil. Our collective awareness of this dreaded disease was heightened lastweek with the announcement that Senator John McCain will now be counted among the brave GBM warriors. While we could be tempted to feel defeat by the continued accumulation of new GBM diagnoses, EndBrainCancer is taking this opportunity to share the perspective of OPTIMISM, EDUCATION, RESEARCH and HOPE. Click Here to Download Information about the first steps to take when faced with a similar diagnosis EBCI MEDICAL ADVISORY BOARD SPEAKS UP Genomic Testing, Immunotherapy and Precision Medicine The EndBrainCancer Initiative (formerly the Chris Elliott Fund) and I are fortunate to partner with a network of clinical experts, who belong to our Medical Advisory Board. Rather than focusing on the limitations of Standard of Care for GBM, our experts discuss the possibilities of emerging diagnostics and therapies that newly diagnosed GBM patients, including Senator McCain, have potential access to if they do not settle for Standard of Care for this disease, and desire to be aggressive in their treatment. In working with our organization and our “Direct Connect” and Clinical Trial pre-qualification programs, we can facilitate immediate access to these advanced treatments. This is […]
Our visit with Dr. Nephi Stella at the University of Washington on July 19th, 2017 was fascinating and we wanted to share some of the information with you! Ultimately, research suggests that cannabinoids molecules with a chemical structure similar to the marijuana component THC can affect neuroinflammation. Consequently, Dr. Stella is currently investigating whether cannabinoids affect the interactions among neurons, astrocytes, and microglia that occur during uncontrolled neuroinflammatory responses. Additionally, his lab group is currently testing whether agents acting through cannabinoid CB2 receptors can boost the immune system against brain tumors or temper the autoimmune response associated with multiple sclerosis. The goal of this research project is to identify cannabinoid agents that will provide treatment of diverse neuropathologies while being devoid of psychotropic and abuse properties. It is, therefore, exciting to think about what the future might hold for medical marijuana. For example, could it be the case that Green Health Docs Missouri could soon be prescribing marijuana to combat brain tumors? In states like Missouri where marijuana has been legalized, cannabis is being used to manage a wide range of health complaints relating to the brain such as anxiety, depression, and chronic pain. Here is a little bit more […]
Dear Cancer Heroes, Celebrating the courage, grace, and selflessness of patients everywhere who battle cancer and participate in clinical trials. The wall was filled with notes from providers, families, and advocates who expressed their gratitude to the patients who share their experiences, and advance science through participation in clinical research. “Clinical trials are the life blood of scientific invention, and the generosity of study volunteers is essential as we work together toward medical breakthroughs that can have a lasting impact on people’s health, well-being, and welfare,” said Andy Lee, Senior Vice President of Global Clinical Trial Operations at Merck Research Laboratories. Recognizing those study volunteers who do participate in clinical trials is essential to spreading awareness about the important role that they play in the clinical research process and in improving public health. Murray Abramson, Vice President of Global Clinical Operations at Biogen, comments “Without patients’ contributions and voice, solving the greatest challenges in medicine and conquering disease would not be possible. Patients, thank you!!!” EndBrainCancer Initiative is in a privileged position to provide the research community with precious and priceless information….the voice of the patient! Thank you, for inviting us to join you on your journeys and hear […]
Brain Cancer Treatment, Pre-Qualifications for Clinical Trials, Research/Treatment Options, and Policy Change Are a Tall Order; The EndBrainCancer Initiative Does It! At a mid-May fundraiser – “Brains Matter” – the EndBrainCancer Initiative raised $80,000 in donations that will fund their “Direct Connect” program. This unique program, provides HOPE and guidance to brain cancer patients and their families; all services are at no-cost to patients and caregivers. The “Direct Connect” program educates patients about options, prequalifies patients for enrollment in clinical trials, and fuels research. People living with brain cancer get connected with top brain cancer specialists, major brain tumor centers, and cutting-edge therapies throughout the U.S. Brain tumors can grow very quickly, therefore immediate access to advanced treatments, specialists, and clinical trials is a MUST. For treatment options, EndBrainCancer Initiative collaborates with medical, bio-tech, and pharmaceutical services; diagnostic device suppliers; and the research community. Treatment options expand when organizations work together…. Read the full press release HERE.
For the last 15 YEARS we’ve had the opportunity to make an impact on the lives of Brain Cancer Patients and their families. As I’m writing today, I can’t help but reflect on one particular day. Not the day that my late husband, Chris Elliott, and I started our brain tumor journey but the day that Chris and I decided to “DO SOMETHING ABOUT THIS DISEASE”. May 18, 2002. This is the day that the Chris Elliott Fund, now known as the EndBrainCancer Initiative, www.EndBrainCancer.org, was born. There are still so many mixed emotions that memories of this day brings and I always get a lump in my throat when I think about it. I still feel the absolute fear and terror of that day as this is also the same day that our neuro-surgeon, Dr. Peter Black at Dana-Farber told us, “he would not be doing a surgery today because Chris’ brain cancer had spread to his brain stem as well as to his spine”. I knew enough at that time about the disease to know that my late husband’s fight against this disease was going to come to an end soon. I was crushed and attempted to be strong for Chris, but honestly, I just […]
John Brace came into my life a mere three weeks after I had buried my husband, Chris, who died from Glioblastoma Multiforme (GBM) which was just six weeks after Chris and I had created the Chris Elliott Fund, now known as the End Brain Cancer Initiative. He was the first person I ever had the honor of helping with his brain cancer diagnosis other than my late husband Chris. John will always have a special place not only in my heart but also in the heart of the End Brain Cancer Initiative. As evident from my first meeting with John, he remained a true inspiration to all those affected by a brain tumor diagnosis. John willingly shared his experience with others and always found a way to give other brain cancer patients HOPE as evidenced here in this 2010 news release and of course in his 2012 EndBrainCancer blog post about being a survivor. Earlier, in 2005, the Seattle Times did an article about John in reference to his decision to sign a “do not resuscitate” order after experiencing a complication stemming from his already 2-year battle against brain cancer. It was inspirational and especially timely due to the controversial […]
Today, my thoughts are on Oshin Kiszko, the little boy in Australia whose brain cancer, not only ended his life but divided a nation in the process. Oshins’ parents felt that repetitively subjecting their son to the significant side effects of chemotherapy and radiation was far worse than giving him quality of life over quantity. Instead, they opted for Palliative Care (a form of healthcare provided to people who have a progressing illness that will lead to death). Palliative Care is active and supportive care that seeks to maximize quality of life and comfort. It can be provided in private or public hospitals, hospices, residential aged care facilities as well as in a person’s home. After several rounds of chemotherapy, Oshins’ parents could no longer bear to see him suffer through the side effects and began refusing the traditional Standard of Care offered by his doctors. The case ended up in court, garnering the attention of his native land of Australia and beyond. I certainly don’t have all the specifics on Oshins’ particular disease like whether or not they ever received a 2nd, 3rd, or even 4th opinion, or if he was being treated by a dedicated pediatric brain cancer specialist […]
Last November, in honor of National Caregiver Month, our team combined forces with Novocure to run a nomination based contest in efforts to award one of the amazing caregivers out there with a trip to the 2016 Annual Society of NeuroOncology Symposium where they could be part of our annual exhibit, attend seminars on the latest and greatest treatments and hear from top neurosurgeons throughout the world. Our 2016 National Brain Cancer Caregiver winner was Christi Estes whose husband Rob had been diagnosed with a Grade 4 Glioblastoma in late 2013. Today we have the honor of sharing her story with you, in her own words. We’d like to thank Christi for her honesty, her transparency and her encouraging faith while traversing such a challenging path. Where do I begin? The last 42 months have brought so much. Devastation, fear, research, exhaustion, but also abundant blessings. Wedding vow renewals, family vacations, a once dreamed of family farm house now a reality, and a Foundation to help others in their own battles. Four short years ago I never could have imagined our lives would look like this. Yet here we are and here we will stay, fighting the good fight. The year 2013 was a […]
Their caregiver or loved one spent more time with them…… As most of you know, November was National Caregiver Month and thanks to a sponsorship from Novocure the EndBrainCancer Initiative (EBCI) was able to provide Awareness & Outreach throughout the month of November. Most importantly, we were able to run a national campaign asking for Caregiver nomination submittals. I look forward to rereading all of the nominations submitted and find the lessons learned from these nominations quite invaluable. I write today because a GBM patient recently mentioned that he wished his Caregiver would spend more time with him. His statement stopped me in my tracks because I often wish I had spent more time with my late husband, Chris Elliott, while he was fighting the same disease. I didn’t realize it at the time because I was trying to keep my children’s lives as normal as possible. I was simply unwilling to allow cancer to change my childrens lives more than it already had. However, in reflecting back, I had many perfect opportunites to spend time with my husband that I would never get back. When I heard this GBM patients story today, I felt compelled to write a blog post. It has been awhile since I’ve slowed down […]
As you know, we, together with Novocure have been running a Caregiver Nomination Contest for the last few weeks in honor of November being National Caregiver Awareness Month. So, today the first day of this very important month, we’d like to announce our WINNER! Christi Estes “Cancer may take my life…the assurance is that cancer saved my soul” – Rob Estes Christi’s husband, Rob, was diagnosed with a Grade 4 Glioblastoma in 2013. Since then, Christi has not only been tirelessly caring for and fighting for her family; she has been selflessly and instrumentally involved in the formation of a 5013c as a result of a spiritual stirring in the heart of her husband. Their, Can’t Never Could foundation was born out of a new Christ-Centered and passionate desire to purposefully help individuals and groups facing adversity and suffering through personal battles. It is our honor to share with you Christi’s nominations: “Christi has been the rock in her husband’s fight with cancer. Without her love, support, and belief in God her family would be lost.” By Sara Keith “Of course the news of brain cancer to this young couple and their children was devastating. Their attitude, however, from the day of diagnosis has been remarkable. Both Rob and Christi set […]
(Article posted in Cure Magazine on 8/17/16) Dellann Elliott Mydland wants to take the politics out of brain cancer research, and for a good reason: to produce more survivors of the disease. For nearly a decade and a half, Mydland, the founder and president of End Brain Cancer, has been working to connect patients, researchers and doctors to advance clinical trials and ensure that patients face the best possible chance of survival. This, she says, is found in clinical trials, not standard treatment. “The people who are living and who are surviving had a very good neurosurgeon, and also had their tumor tested and were put into clinical trials,” she said in an interview with CURE. “Those are the people who are beating this disease. The people who aren’t offered these things and [are] getting the standard of care aren’t surviving.” In brain cancer research, Mydland says there are not enough collaborative efforts. “It’s very territorial, and that stops progress,” she says, noting that the Cancer Moonshot program will hopefully start to eliminate some of these barriers. Mydland came to understand these barriers more than 15 years ago with the discovery that her husband, Chris, had a brain tumor. When […]
Dear Vice President Biden, Believe me, I have been thinking about you ever since I learned of your son, Beau’s, diagnosis and even more so after his death. I do not know what it is to lose a son but I do know what it is to lose a husband to brain cancer and have been working every day since then for improvements for brain cancer patient-centered outcomes. Wow! What a day in San Francisco yesterday (1.12.16), I watched the press release launching your legacy, the Cancer MoonShot 2020 Initiative and your goal to make an “absolute national commitment to end cancer as we know it today” and the development of The National Immunotherapy Coalition (NIC). I simply want to say “Thank You” and dearly hope this Blog post makes its way to you. You see, I didn’t want my late husband’s death to be in vain and I fully understand your desire that Beau’s death also not be in vain. I also believe that “Advocacy” organizations that deliver direct services to patients would also be able accelerate this initiative. The EndBrainCancer Initiative | Chris Elliott Fund has always worked with patients advocating for IMMEDIATE ACCESS to genomic and molecular sequencing and […]
Dellann Elliott Mydland to Speak at 2nd Annual Turning Point Conference, San Antonio, Texas We are pleased to inform you that Dellann Elliott Mydland will be a featured speaker at a national brain tumor conference entitled “At a Turning Point: Novel Therapeutic Developments in Glioblastoma Multiforme (GBM) Research.” The conference precedes the Society for Neuro-Oncology’s Annual Meeting. Dellann will be further advancing The EndBrainCancer Initiative through her address and networking. EBC is a sponsor of the event. MORE INFORMATION AND REGISTRATION
EndBrainCancer / Chris Elliott Fund Honored as Social Impact Innovator—Fast Pitch Awards Ceremony on October 27th
EndBrainCancer / Chris Elliott Fund Honored as Social Impact Innovator—Fast Pitch Awards Ceremony on October 27th SVP Fast Pitch is the region’s premier competition igniting social innovation. This year, over 100 organizations applied and we are proud to report that EndBrainCancer / Chris Elliott Fund made it as a quarterfinalist! SVP Fast Pitch is produced by Social Venture Partners (SVP), the world’s largest network of engaged philanthropists and the event is almost entirely run by over 100 dedicated volunteers. Volunteer coaches have been helping Dellann Mydland and The EndBrainCancer Initiative improve our pitch. JOIN US FOR THE SVP FAST PITCH AWARDS EVENT On October 27, the best innovators pitch live at McCaw Hall in Seattle Center before an audience of nearly 1,000 philanthropists, investors, and community leaders. A general admission ticket costs $125. The ticket price includes great networking, entertainment (e.g., the inspiration pitches), food and wine, and, most important, funding the prizes for the non-profit winners. A large portion of your ticket cost is tax deductible. You may register online.
Chris Elliott Fund Officially Re-launched as The EndBrainCancer Initiative The Chris Elliott Fund has officially re-launched in 2015 as the EndBrainCancer Initiative. Historically, our 501 (c)3 non-profit corporation has been associated with Christopher Stewart Elliott, co-founder, who himself bravely fought brain cancer and started the Fund with his wife, Dellann, before passing in 2002. The goal of the organization is and has always been about providing IMMEDIATE ACCESS to advanced treatments, studies and clinical trials at the time of diagnosis vs. waiting to have this conversation after all Standard of Care treatments have failed. It has been about being Proactive rather than Reactive to brain cancer. The primary reason behind our name change and new initiative is because industry, pharmaceutical companies, major donors and other partners have not fully understood that our direct one-on-one version of “Patient Support” has always been about fueling research through a Patient Focus and about getting these patients into advanced treatments quickly in order to create a greater quality of life, longer survivorship and perhaps, survivorship. As an organization, we had never properly defined our version of “Patient Support” and how our work leads to translational medicine and additional treatments quicker than the traditional […]
It is with great pleasure that I accept this opportunity to write a piece for CURE. I am hopeful that this will be: Informative, insightful and inspirational Create expanded collaborative efforts Provide hope Encourage a change for patients diagnosed with an initial glioblastoma (GBM) brain tumor in the areas of initial diagnosis, initial surgery and a change in our current standard of care. This will be done through providing immediate access to advanced treatments, studies and clinical trials. The change I am referring to is a significant shift in current standard of care. This includes discussions related to prior consent, immunotherapy, vaccines, devices, DNA sequencing/genomic profiling, MGMT testing and so on. It also includes discussions related to advanced treatments, targeted therapies and/or clinical trials prior to surgery — essentially, a much more proactive and personalized approach for this disease at the time a primary cancerous brain tumor or metastatic brain tumor is diagnosed. You may be wondering who am I and what the EndBrainCancer Initiative |Chris Elliott Fund is. First of all, I want to share information that I have learned through personal experience, as a brain cancer advocate and I love to write. Secondly, I have now been immersed in […]
As you know, Chris Elliott Fund’s goal, a 501(c)3 non-profit organization, is to provide IMMEDIATE ACCESS to advanced brain tumor/cancer treatment options through our no cost Patient Support Services Center and “Direct Connect” program which provides Education, Awareness, Advocacy and Research. Simply put, our efforts lead to putting brain tumor patients into clinical trials and translational treatments faster than they would if left to their own resources. As of today, 80% of all brain tumor patients are not immediately treated at a brain tumor center, NCI designated center, or by a dedicated top brain tumor neuro-oncologist or neurosurgeon; this is why our work with the End Brain Cancer Initiative launch and the Chris Elliott Fund is so VITAL. When I think VITAL, I think of Paul Allen. His work through the Allen Institute for Brain Science and the fact that he chose the Seattle area as the “home” for his work means so much to the world of brain cancer and brain diseases, not to mention, Seattle area patients. Mr. Allen’s focus on the Lake Union areas for the redevelopment of the bio and medical fields has made a significant impact. With over 600 bio companies in Washington, around 40 […]
I was asked to respond to the controversial issue of a Connecticut teen who was refusing treatment for her cancer and I’ve given it a lot of thought, not only as patient advocate but also as a mother. My personal belief, as discussed in the Brittany Maynard case, is that all should have access to the “Death with Dignity” act but ONLY AFTER ALL TREATMENT OPTIONS, STANDARD PROTOCOL, CLINICAL TRIALS AND OFF-LABEL DRUGS THAT SHOW BENEFIT TO THE SPECIFIC DISEASE HAVE BEEN EXPLORED. When I first read about this, my first thoughts were of course, this 17 year old should have the right to choose, especially if her mother is in agreement. However, when I read the article a second time and focused on the statement, “ Doctors said chemotherapy would give her an 85% chance of survival but without it, she would die”, it took me right back to the Brittany Maynard issue. Those of us who are patient advocates and work daily with brain tumor specialists who treat GBM, believe that Brittany A) did not know about all of her options and B) nor did she have IMMEDIATE ACCESS to all advanced treatment options/clinical trials that could have created a better quality of life for her […]
Right now, I am working with 6 women who are either having a routine MRI this week or have a husband who is having one; MRI’s ordered with the sole purpose of checking on the stability of their brain cancer. I can just about hear the “sigh of relief” that is experienced when one’s brain tumor specialist or neuro-oncologist shows them the MRI film and states, “all looks good. No new tumor growth”. Having personally been in that NO’s room several times before, I still get that nervous feeling when a patient or a caregiver with the Chris Elliott Fund tells me “it’s that time again for my routine MRI. Please pray that it is clear……”. I wanted to acknowledge this feeling of fear experienced by both the patient and the caregiver or family member during this time because I know it is very real. The days leading up to a routine MRI to determine if there is new growth or not has often times been described as a “roller coaster”. It is indeed. The reference to “roller coaster” refers to the feelings that one experiences the week or so before the MRI. One moment, you are confident that all is going to be ok, that […]
Last Friday night, this thought was once again confirmed. The Chris Elliott Fund held its “2ndAnnual Patient, Caregiver & Partner Community Open House”. Our Brain Tumor Patient Support Services & Call Center is open to the public all year long but we desire to make sure that the patients, their families, our community and our funding partners know that at least once a year, we want them to walk through the doors so that we can say “Thank You”. As I write this, I have a lump in my throat. As the Dad of a patient we have helped got ready to leave, he came forward with teary eyes, very humbled and said “I just have to give you a hug and say thank you for what you and the Chris Elliott Fund does for brain cancer patients. I had no idea how much you serve this population. I want to get involved”. When my late husband, Chris Elliott, and I started the Chris Elliott Fund on May 18, 2000, our goal was to not only fund research but also to assist brain tumor patients and their caregivers/families with the sharing of our own story, our own experience, what we […]
Happy New Year to each of you! 2015 is starting off with a BANG with a focus on brain cancer patients and new treatment options for rGBM. I am delighted to finally be able to BLOG about a new clinical trial that is recruiting at the Seton Brain & Spine Institute in Austin, TX and will soon be recruiting as well in Seattle, WA. I am not at liberty to say more about the Seattle site at this time, but can talk further about this trial in Central Texas. To learn more about the Seton Brain & Spine Institute, click here:http://www.setonbrainandspine.com/treatment/tumors Take a peek at this video to learn more about how this DEVICE works on Solid Tumors. This device is now known as the “Nativis Voyager System”. This video reflects how well it works and worked on canines. The data from its use on canines was so incredibly positive, that it was used to get the human trials stared for recurrent GBM. I have eagerly been sitting on the sidelines watching this technology, the canine clinical trial results and potential treatment for rGBM for the last 3 years. I am now DELIGHTED to see this potential new treatment for rGBM become […]
As 2014 draws to a close, I am thankful for the work that I get to do each day and have been doing for the last 14.5 years, inspired by the late Christopher Stewart Elliott. I am thankful that the Chris Elliott Fund and I make an IMPACT and a DIFFERENCE in your lives, and shorten the GAP between a brain tumor diagnosis and the time it takes to receive IMMEDIATE ACCESS to ADVANCED TREATMENT OPTIONS. Thank YOU for your support of the Chris Elliott Fund. In case you intended to, but haven’t yet, made a Year End gift, you can do so online by clicking HERE. I would also like to personally invite all in the Seattle Metro Area to CEF’s: 2nd Annual Patient, Caregiver, Partner & Friends Community Open House Friday, January 09, 2015, 4-8pm @Chris Elliott Fund Patient Support Services & Call Center, 14959 NE 95th St., Redmond WA 98052 You will have the opportunity to meet our staff and learn more about the work we do every single day on behalf of brain tumor patients across the country, including IMMEDIATE ACCESS to advanced treatment and clinical trials PLUS learn about our exciting 2015 expansion plans. Refreshments and light appetizers will be provided. To help us with planning, we are asking that […]
Dellann just completed a compelling interview with Laura Martin from the award winning British documentary company Love Productions. They are putting together a documentary on “Death With Dignity”. As we all know, this is a very controversial law, accessible in only 3 states so far. Dellann’s viewpoint on this matter? “I personally believe all humans should have access to “Death with Dignity” when a terminal illness is diagnosed. What I want to caution all of us about, and why I agreed to do this interview in the first place, is that I do not want to see those newly diagnosed brain illness/cancer patients just jumping into Death with Dignity before they’ve been made aware of their options. It is SO imperative that the newly diagnosed be A) treated by a brain tumor specialist at an actual brain tumor center and B) create a “Plan B” for when the brain cancer/tumor returns if current Standard Treatment/Standard Protocol does not create survivors. Currently, those that are surviving this disease are those that are seeking out IMMEDIATE ACCESS to advanced treatment options and Clinical Trials. When and if the time comes…where there are truly no more options for advanced treatments and one’s quality […]
As many of you know, the Month of November was National Caregiver month. The Chris Elliott Fund, since then, has been posting several great books and/or tips for Caregivers to read. I believe we are on Post #9 and have planned a total of 15 posts on this subject. It is in this spirit that I write this BLOG post. For the last several weeks, I’ve been reflecting on my past experience as a caregiver for my late husband, Chris Elliott. Boy, I can truly say, this was definitely the hardest thing I’ve ever had to do so far during my 53 years. To read a bit more on how I managed this while still raising our two young children, please read “Chris’ Story”. Young families where the Dad has brain cancer has been what I’ve been thinking a lot about lately. The Chris Elliott Fund and I have been involved recently in many brain cancer cases where there are young children involved and typically, it is the man in the family that has brain cancer and his wife also works outside of the home. I was thinking about this aspect of caregiving this morning while listening to several phone […]
It’s OK to Feel Sadness & Anger for your loved one that has passed away without receiving advanced brain cancer/tumor treatment, but…….
Please turn your anger and sadness into something good as a way to honor your loved one. I might be able to help you with that. At the Chris Elliott Fund, we talk “LIVE” all the time as well as via email/social media & online support groups with many caregivers, loved ones and the families of brain cancer patients that have passed away. Something I have noticed is that often times, there is anger and sadness expressed when a new treatment or a possible new treatment/clinical trial becomes available or anger arises when the loved one is not able to participate in a clinical trial for various reasons. Most of the anger and sadness stems from the following: Receiving “Compassionate Use” of the treatment under study is so hard to get, and The parameters to get into a Clinical Trial are very tight (this is what Al Musella, The Musella Foundation” is working on.) The idea would be to lesson these parameters and to make the actual time spent in the clinical trial shorter. Brain Tumor patients and their loved ones often feel anger and sadness that their loved one did not get the opportunity to have a new and/or […]
With the continuously increasing amount of people worldwide investing in a cell phone, there comes some risks, that these users should be made aware of. This includes phone security, hackers and cold calls – some of the latest phone security statistics here educate people on the potential issues they might not know about. However this is an obvious answer. Health wise, there is a new issue arising. Does cell phone use cause health ailments? I don’t know if cell phones cause brain cancer or not but what I do know is this. When my late husband, Christopher Stewart Elliott, was diagnosed with brain cancer, the first thing that went through my mind, after the shock of this diagnosis, was WOW! My husband has been in the telcom business for many many years, used to use one of the first large cell phones that got “hot” when used and he used to use it a lot as he was in sales and used to be on his phone all the time between and during appointments…… While Chris was going through his chemo treatment, at that time, it was BCNU, the young man who was typically seated beside him each week was […]
Do you ever have those really rare “Pinch Me Moments”? Every once in a while, they DO HAPPEN. Ever since last Friday AND Saturday the 15th, I have been kind of “skipping” over the last week because I am just so “Happy & Hopeful” for brain cancer patients. Let me tell you why……. Most of you know that I’ve been in the brain tumor/brain cancer space for 14.5 years and most of you know it is because my late husband, Chris Elliott, was diagnosed with GBM at 39. During the last 14.5 years, I have never felt so much HOPE in treating brain cancer like I do now. I’ve been involved in a project for the last three years, that although was made public last Friday, much is still not public knowledge, so the details that I can share are limited. I am increasingly becoming convinced that to KICK BRAIN CANCER BUTT, it will be a combination of surgery, radiation, device and chemo/vaccine/immune therapy. A new device, The Voyager, is going into clinical trials for solid tumors and the first category of solid tumors is GBM. This device has been in Research & Development for the last 16-18 years in […]
When I learned three weeks ago that Brittany Maynard, a resident of Oregon, had terminal brain cancer and had planned to exercise her right-to-die, the only thing that stopped me from jumping in my car and driving down from Seattle was my work load and work travel. You see, although I am a very compassionate person and do believe in “death with dignity” based on what I have read, I don’t feel that Brittany nor her family explored all of her options in efforts to fight her brain cancer. As a patient advocate, I work with brain tumor patients and their families locally, nationally and worldwide through my work with www.ChrisElliottFund.org and www.EndBrainCancer.com so after weeks of thought on this issue, I find Brittany’s decision, so early in the treatment of her brain cancer, hard to comprehend. I fight, every day, for IMMEDIATE ACCESS to advanced treatment for this patient population. There are options out there and it’s our job to help people find them. As my colleague, Dr. Al Musella from the Musella Foundation pointed out, next week is the Society of Neuro-oncology’s Annual Meeting where neuro specialists, such as researchers, scientists, neuro-surgeons, neuro-oncologists, patient advocates, pharma and device companies, etc. come together to present new treatments and the […]
Dellann Elliott Mydland, President & CEO of the Chris Elliott Fund, was recently featured on Clear Channel Seattle’s KUBE 93 FM and Sports Radio KJR 950 AM where she spoke about issues related to Brain Tumors and Brain Cancer, some of the latest treatments and diagnostic technologies, and especially the importance of access for all Americans. Clear Channel’s Emoree Martin hosted the interview which also featured Nesby Glasgow, Board Member and former player for the Seattle Seahawks. Said Martin of the interview: “Clear Channel Seattle listeners value programming that is rich in information and dialogued. I would like to thank The Chris Elliott Fund for all your efforts to advocate and support so many people in our community.” Says Elliott Mydland of the opportunity to participate in Clear Channel’s Public Affairs programming: “We were thrilled to have this opportunity to reach out to an informed radio audience as so much of the work that the Chris Elliott Fund does is directed to educating the General Public on matters related to Brain Tumors and Brain Cancer BEFORE someone they know is affected. We can’t thank Clear Channel enough for this opportunity.” Listen to the full Sports Radio KJR AM program here. […]
Being a Rockstar Advocate for your Healthcare, starts with asking the right questions. Download the pdf – Top 10 Questions to Immediately Ask When Diagnosed – to learn more about what to ask your doctor if you or a loved one is diagnosed with a Brain Tumor.
As you are most likely aware, Chris Elliott Fund strongly advocates that all brain tumor patients be given IMMEDIATE ACCESS to the most advanced and most appropriate FDA-approved treatments for their particular disease. Yet, CMS and DME coding and other classification issues continue to create significant roadblocks for certain groups of patients, effectively denying them access to potentially life-saving treatments. We have just submitted the attached letter to the U.S. Department of Health and Human Services (Gliadel Coding Problem Letter 06-20-14). in response to a classification issue around Gliadel wafers. However, we are just one voice, and need others to join us in reversing current policy. These letters must be received by June 30 to be in time. You can join CEF and make your voice heard in one of two ways: Write a similar letter to CEF’s (must be received by June 30th). We will be happy to assist you with this. Furthermore, if you would like CEF to overnight it via USPS on your behalf, all letters need to be emailed to [email protected] by midnight this Wednesday so that we can get them out early this TH morning for arrival early on Monday June 30th. Note that the letter will need […]
Below is the tenth brain food in our 10 part series on recipes for your brain: Turmeric & its active ingredient Curcumin. Do you find yourself trying to find the right diet combination during or post treatment? Ask the Chris Elliott Fund, we can help plan a diet around healthy brain foods. Call, email or leave us a note today: 1-800-574-5703 [email protected] Turmeric & Curcumin Turmeric is a common spice used in India for centuries, not only as a spice but also for medicinal purposes. The active cancer fighting compound found in turmeric is curcumin, a member of the ginger family. How important is this agent in brain health and cancer prevention? Let’s take a look. The Research: Curcumin is being studied in clinical trials for colon cancer, Alzheimer’s disease (in mice) and cystic fibrosis. Its role in to cancer prevention is related to its efficacy in encouraging apoptosis, the process of cell death in some cancer cells. Note that studies are still ongoing and not definitive. One study published in March of 2012 discussed the spice as a combatant of some pediatric brain tumors. There appear to be some challenges in the ingestion of curcumin due to poor absorption […]
Below is the ninth brain food in our 10 part series on recipes for your brain: Tomatoes. Do you find yourself trying to find the right diet combination during or post treatment? Ask the Chris Elliott Fund, we can help plan a diet around healthy brain foods. Call, email or leave us a note today: 1-800-574-5703 [email protected] The importance of lycopene rich foods like tomatoes has been documented for some time. It is mentioned in literature related to oxidative stress, which may play a role in the causation of the disease. Brain health studies have actually identified lower levels of plasma/serum lycopene in brain impaired individuals. Key Nutrients Tomatoes contain several components for good brain and overall health including: Vitamin C Vitamin A (as carotenoids) Fiber Potassium Lycopene Of course, as in most discussion about epidemiology, nutrition and health, there are always naysayers. As in all nutritional advice, tomatoes are tomatoes be including in a brain function enhancing and cancer fighting diet as well as other deep colored fruit and vegetables. We know cooking and preparing these brain foods can get complicated especially if you are balancing treatment, family and work. We wanted to provide easy and simple recipes to help you start preparing […]
Affordable Care Act Registration Deadline: Like most of you, we are concerned about the upcoming roll out of Affordable Healthcare dubbed “Obamacare”. The difficulties with getting the online registration process was well publicized for months and months. At this point the registration process is expected to end on Monday, March 31st. Registration Woes We at the Chris Elliott Fund, have heard from a number of people in several states who are experiencing breakdowns in connecting with the statewide market places as well as the Federal website, healthcare.gov. We’ve experienced jammed phone lines as well. As reported by CNN today, the deadline is expected to be extended. Our Best Advice Try to begin your registration right away. This extension is meant to address the challenges fo those with “special circumstances” (like brain cancer) as well as people who have tried but have not been able to complete the process. We would love to hear from you about your personal experience with Obamacare. What is your best advice? Have you successfully navigated the marketplace? Lets get the conversation started, leave your experience in the comments below! If you are a brain cancer or brain tumor patient and have specific question about navigating […]
You might have read our latest blog post on Chris Elliott Fund’s President and CEO’s journey across the country advocating for brain cancer and brain tumor patients and caregivers. Interested in enrolling in a clinical trial for your brain tumor (regarding the trials listed below or any other trial across the country)? Contact us today. We regularly assist patients in identifying clinical trials appropriate for their situation.
National Patient Support & Advocacy The Chris Elliott Fund’s work and service spans across the country. This March, Chris Elliott Fund’s President and CEO took flight again to meet, speak and sit down with experts in the healthcare industry to advocate for brain cancer patients. Here is a snapshot into the travels of Dellann and all of her hard work advocating for cancer patients. Meeting with Long-time Friend and Brain Cancer Expert Dr. Patrick Wen
National Patient Support & Advocacy The Chris Elliott Fund’s work and service spans across the country. This March, Chris Elliott Fund’s President and CEO took flight once again to meet, speak and sit down with experts in the healthcare industry to advocate for brain cancer patients. Here is a snapshot into the travels of Dellann and all of her hard work advocating for patients.
Below is the eighth brain food in our 10 part series on recipes for your brain: Cauliflower. Do you find yourself trying to find the right diet combination during or post treatment? Ask the End Brain Cancer Initiative, we can help plan a diet around heathy brain foods. Call, email or leave us a note today: 425-444-2215 or [email protected]
On January 22nd the Chris Elliott Fund joined forces with Foundation Medicine for a dinner at Cuoco in the South Lake Union neighborhood of Seattle.
Please enjoy our seventh brain food in our 10 part series on recipes to promote brain health. This series brought to you by our Health Information Concierge. Spinach is the seventh brain food and recipe in the series. Do you find yourself needing help finding the right diet combination during or post treatment? Ask the Chris Elliott Fund, we are
Please enjoy our sixth brain food in our 10 part series on recipes to promote brain health, Lentils.
On Saturday, January 18th 2014, Tamara DePorter, Chris Elliott Fund’s Vice President competed as Mrs. Seattle, as part of the Mrs. Washington America pageant. Her platform is brain cancer and brain tumor patient education and advocacy for advanced treatment for patients, something we appreciate so very much and are proud to have her as our representative at the event.
This week the Chris Elliott Fund traveled across the country to learn and advocate on behalf of our patients. Patient support and advocacy is not only about working daily with patients and caregivers, it is also about regularly meeting and working with industry professionals and experts on behalf of our patients.
We are introducing a new 10 part series on recipes to promote brain health brought to you by our Health Information Concierge. Below is the fifth brain food and recipe in the series. Do you find yourself needing help finding the right diet combination during or post-treatment? Ask the Chris Elliott Fund, we are here to help you in your process to plan a diet plan around foods that are healthy and good for the brain. Call or email today: 425-444-2215 or [email protected] Brain Food #5: Whole grains
The Chris Elliott Fund has been a 501(c)3 non-profit, an organization devoted to brain cancer patient advocacy and advancements in patient care, for 11 and a half years. But until now we have not had a formal Patient Support Services Center. Grand Opening In July of 2013 we moved into our new Redmond, Washington offices. Previous to that we were operating for one and half years out of a shared office space at JMS Construction, who donated 2 small offices. The new office spaces are just down the street from the old Willows Road space, on 95th Street. Our current address is 14959 Northeast 95th St., Redmond, WA 98052 Between July of 2013 and the end of the year we spent several months updating and renovating the space and finding new office furniture to suit the needs of the center. For instance, we have purchased some brand new adjustable office chairs and desks for our administrative staff and receptionists. The official grand opening and ribbon cutting was held on January 3rd 2014. The event was open to the public. We were pleased to have Foundation Medicine present as a sponsor of the event as well as a glassybaby roadshow, offering […]
We are introducing a new 10 part series on recipes to promote brain health brought to you by our Health Information Concierge. Below is the fourth brain food and recipe in the series. Do you find yourself needing help finding the right diet combination during or post-treatment? Ask the Chris Elliott Fund, we are here to help you in your process to plan a diet plan around foods that are healthy and good for the brain. Call or email today: 425-444-2215 or [email protected] Brain Food #4: Walnuts
We are introducing a new 10 part series on recipes to promote brain health brought to you by our Health Information Concierge. Below is the third brain food and recipe in the series. Do you find yourself needing help finding the right diet combination during or post-treatment? Ask the Chris Elliott Fund, we are here to help you in your process to plan a diet plan around foods that are healthy and good for the brain. Call or email today: 425-444-2215 or [email protected] Brain Food #3: Avocados
We are introducing a new 10 part series on recipes to promote brain health brought to you by our Health Information Concierge. Below is the second brain food and recipe in the series. Do you find yourself needing help finding the right diet combination during or post-treatment? Ask End Brain Cancer, we are here to help you in your process to plan a diet plan around foods that are healthy and good for the brain. Call or email today: 425-444-2215 or [email protected]
We are introducing a new 10 part series on recipes to promote brain health brought to you by our Health Information Concierge. Below is the first recipe in the series. Are you needing help finding the right diet combination during or post-treatment? Ask the End Brain Cancer Initiative, we are here to help you in your process to plan a diet plan around foods that are healthy and good for the brain. Call or email today: 425-444-2215 or [email protected] Brain Food #1: Wild Alaskan Salmon – rich in Omega-3 fatty acids, salmon helps keep the brain humming along smoothly, boosts memory and helps us focus. Below is a health recipe that incorporates this brain food and incorporates many other healthy ingredients.
Below is poem authored by the Denise Howell Team (the force behind Babes Against Brain Cancer) in light of a brain tumor diagnosis. Please offer your comments and thoughts in the comments below. Miracle Eve We find ourselves, On this day, Searching on the clinical shelves Tomorrow may, show the way, To how we face, these trials okay. How can it be? All this stuff. It feels like we’ve had enough. But, we have no options We have no choice, Just Fight to win And then rejoice.
About Giving Tuesday: #GivingTuesday was a new national day of giving added to the calendar on November 27th, 2012, the Tuesday following Thanksgiving, Black Friday and Cyber Monday. Please join us on December 3rd, 2013 to take part in a call to action that will change the calendar and help make history. We are celebrating a day dedicated to giving. #GivingTuesday is a movement to celebrate and encourage more, better and smarter giving during the holiday season that we are proud to be a part. GivingTuesday is a special call to action that creates a national day of giving around the annual shopping and spending season to inspire giving every day. Families and individuals are encouraged to be generous in whatever ways matter, whether that means volunteering at a local charity or donating to a favorite cause. #GivingTuesday to End Brain Cancer The Chris Elliott Fund (CEF) has made it it’s mission to #give the power of information, education and support to patients and caregivers. Ultimately to give the gift of survivorship and improved outcomes—to one day end brain cancer.
Today we share with you the story of Frank and Heather. 25 year old Frank is the caregiver for his wife Heather, also 25, who was diagnosed with grade 3 brain cancer last December. Frank received 2 separated nominations by Arlone and Belinda for CEF’s Caregiver of National Caregiver Month Award. Heather’s journey through cancer has included brain surgery, radiation, and chemo over the past year. Frank has been Heather’s rock and source of support through this process. Like all of our caregivers, Frank has gone out of his way to not only provide the day to day care but also the support that will help Heather in the long run, actively seeking the best doctors in Dallas, where they live. Actively working to make sure Heather is cared for but also that she finds the best and proper treatment.
Today we hear from Karen who nominated Brian, her brother, who took care of their mother after she was diagnosed with Grade 4 Glioblastoma. Karen shares a few words about Brian, her caregiver hero: “My brother dropped everything to stay and take care of our mom after she was diagnosed with grade 4 GBM. He had never taken care of anyone with cancer before, but he did it for 3 1/2 months until she died. He was only supposed ot stay a few days until fate showed a different plan. He also took care of our Dad who ahs dementia and promised our mom he would take care of him after she was gone. It’s been almost 2 years since that short trip became a complete change of life for my brother” We are honored and proud to share Karen and Brian’s story with you. All of the work our caregivers have done and continue to do is inspirational and deserves recognition. Karen nominated Brian as part of our campaign to recognize all of the amazing work caregivers are doing during National Caregiver Month. To see a list of caregivers and their stories search our blog for the tag “National Caregiver Month […]
Today we hear from Angel who has nominated Todd. Todd is the caregiver for their brother Kim. Kim was diagnosed with Glioblastoma brain cancer. “Todd helped with anything and everything to make his brother’s last days more comfortable, often sleeping on a chair to be near everyone during those important days. Todd did everything from showering, feeding, to helping him at the urinal. Todd helped him with anything and everything to make his last days more comfortable. Unfortunately Kim lost his battle to GBM on August 25th, but we commend the work and support of Todd and all those who supported Kim throughout his battle.” We are honored and proud to share Todd, Angel and Kim’s story with you. All of the work our caregivers have done and continue to do is inspirational and deserves recognition. Angel nominated Todd as part of our campaign to recognize all of the amazing work caregivers are doing during National Caregiver Month. To see a list of caregivers and their stories search our blog for the tag “National Caregiver Month 2013” or use this link. If you are currently undergoing treatment or caring for a loved undergoing brain cancer or brain tumor treatment don’t hesitate to contact […]
Today we hear from Leah who nominates the parents taking care of their daughter Maddie, a 6-year old girl who fought a tremendous fight with Grade IV Glioblastoma for 21 months. Like all of our caregivers, they show tremendous love, support, and strength for their loved ones. Going out of their way to make sure they receive the best care and support. Leah, Maddie’s grandmother offered amazing words for her caregiver heroes: “I have never seen two people that have put so much love and compassion to help their daughter live as normal a life as possible and put all their wants and needs aside to give their daughter everything they possibly could to fulfill a lifetime in only two years. People are still replying to the Fight for Maddie Fscebook page on how they are so amazed how Patrick and Melanie have cared for their daughter and given her the opportunity to live a lifetime in less than two years. As her caretakers they have had to make decisions no parent should ever have to make, but their decisions have always been what is best for their daughter, even the day she earned her wings. I have no doubt that […]
Sheila Lang nominated her father Frank Vinson Sr. Frank was 79 when his son Lynn was diagnosed with Glioblastoma. Sheila is nominating Frank for caregiver of the month for his courageous and perpetual support for their brain tumor warrior. Every weekday “Frank would drive 30 miles to take care of his son. Frank did all the care for him, bathing him, feeding, and taking care of his every need” said Sheila. “He never complained about having to take care of his 57 year old son that was battling GBM. As he slowly watched his son lose his independence he never complained. Frank wanted to do everything possible for Lynn, besides cooking for him, bathing him, lifting him in and out of his wheel chair, he even helped some health and home hospice do their routine daily duties and the girls enjoyed his help. Frank never complained, he really enjoyed building that father son relationship during Lynn’s last months.” “There is not another selfless father I know that deserves this more than Frank.” Unfortunately Frank and Sheila lost Lynn to GBM in July of 2011. Something that lives on with Sheila and Frank is the unbelievable nature of their brain cancer warrior, […]
We are pleased to announce all of the nominees for our National Caregiver Month award program. A special thank you to all who nominated the amazing individuals in their lives who do amazing work every day. About National Caregiver Month: November is National Family Caregivers Month. This was first named as an official presidential proclamation in 1997 by former President Clinton. Every president since, Republican and Democrat alike, have issued this annual proclamation appreciating family caregivers. In president Obama’s proclamation in 2011 he stated: “Across our country, millions of family members, neighbors and friends provide care and support for their loved ones during times of need. With profound compassion and selflessness these caregivers sustain American men, women and children at their most vulnerable moments…during National Family Caregivers Month we pay tribute to individuals throughout America who ensure the health and well-being of their relatives and loved ones. Many of our nation’s caregivers assist individuals to help improve their quality of live. Their efforts help deliver short term comfort and security, facilitate social engagement and help individuals stay in their homes and communities as long as possible. This heroic work is often done while caregivers balance other commitments to their families, jobs and […]
Undergoing treatment for brain cancer or a brain tumor may make it difficult for you to work, and therefore may leave you strapped financially. Social Security Disability (SSD) benefits can remove some of the stress by providing financial support during this difficult time, as it is important that you are able to support yourself through this difficult time. That’s why it may be in your best interest if you know “how much is disability insurance” just in case you need to inquire about any additional financial help until you are able to return to work. If you think that you are due SSD but you haven’t received any, then it might be a good idea to involve Social security disability attorneys in your case. Medically Qualifying for Benefits To meet the eligibility requirements for SSD, you must prove through thorough medical records that you have: A definitive diagnosis, A condition that has prevented or will prevent you from working for a period of at least 12 months, And a condition that can either be matched with a Social Security Administration (SSA) listed condition, Or a condition that is so severe that it meets eligibility requirements without meeting or matching a […]
Jim was recently diagnosed with a Grade 4 GBM in December of 2012. In recent months he dropped in to the Chris Elliott Fund offices for consultation on his case, as well as attended our patient conference in September. We encourage you to read the story he shares today. His experience is one that we like to see: he was referred to an expert upon diagnosis, was provided access to innovative and advance treatment from the start, and he continues to live with hope, love and support from his family and extended support network. We post our patient stories to further the messages of hope and inspiration we see from patients we work with. We also know that the more information we can continue to share the more we can help patients in their own journey. If reading this story leaves you with questions about your own treatment or if you are just looking for a different opinion. Please give us a call or email, we are here to help. September 30, 2013 My name is Jim. I am 55 years old and live in Sammamish, Washington. I have a wife, Laurie, and two adult children, Stacy and Craig. In […]
Amazon offers a fantastic and easy opportunity for shoppers to contribute to their favorite charity! The program is AmazonSmile where .5% of all eligible purchases through smile.amazon.com (Amazon’s site) goes to the charity of your choice. We’ve set up our account, so you can make contributions to the EndBrainCancer Initiative. Amazon does all the work, you just need to start shopping! The only way to be sure that a portion of your purchases goes to the Chris Elliott Fund is to begin shopping at smile.amazon.com and select the EndBrainCancer Initiative. Thanks for shopping. You can also start by clicking the banner below:
November is National Caregiver Month. It is a time to acknowledge the important role that family, friends and neighbors play in caring for those they love. Caregivers offer a range of services including emotional and spiritual support, assistance with financial matters, transportation, home and health related services. According to the Family Caregiver Alliance, caregivers provide an estimated $450 billion worth of uncompensated care to loved ones annually. We know how important a role our caregivers serve in a brain tumor journey. Caregivers impact the lives of many individuals. They give of their time, energy and love to benefit others. At times caregivers forsake their needs for the needs of others. The Chris Elliott Fund wants to hear about your caregivers, hear about the ones that are making the day to day difference in your treatment. We are now taking nominations for the CEF caregiver of National Caregiver Month. We will be selecting 3 winners to feature during National Caregiver Month to spread the word about what your caregiver does and share your journey. The three winners will receive mention on our social media pages and website. All nominations submitted will be mentioned on our website. Nominations close November, Friday November […]
CEF is seeking a highly committed & compassionate individual to join our Patient Support Services Team. The Chris Elliott Fund – Providing National Brain Tumor Patient & Family Support for the last 11.5 years, a 501 (c)3 non-profit organization whose mission is to provide IMMEDAITE ACCESS to advanced treatments and to EndBrainCancer through Education, Awareness, Advocacy and Research is growing. Job Description: Download Here Please send a cover letter and resume responding to this open position to [email protected] Please include your name in the subject line of the email.
Our son’s Journey (our journey) with brain cancer (Glioblastoma Multiforme) began on March 1st, 2008. Our Son, Jason, at 24, went to the emergency room at 10 in the morning because of a severe headache. After an exam and CT scan, the physician discovered a softball-sized tumor in the right frontal lobe of Jason’s brain. Jason was medevac’d to the nearest hospital, 70 miles away, while we got on a plane in order to be at our son’s side. Jason had emergency surgery within 12 hours of diagnosis and then the battle to beat this disease began. It took 2 weeks, but we finally received the diagnosis and began researching it. Researching who, what, when, where and how, a daunting task under any circumstance, but add the life or death of your child, the life of a loved one it can be overwhelming. Within a few days, two separate people highly recommended we contact Dellann Elliott and the Chris Elliot Fund (CEF). Dellann, though herself very busy as a single mother running this organization, made time in her busy schedule to meet with our family and friends. She informed us of how important it is to seek medical […]
Jerry Dunaway’s Story, Part 3 Codi is a brain cancer warrior and offering her experience to the Chris Elliott Fund blog. She is a patient advocate for her brother Jerry Dunaway who at 29 years old was diagnosed with Glioblastoma brain cancer. Please join us and follow her story and experience as a patient advocate and brain cancer warrior. Read about Codi and Jerry’s story in Part 1 and Part 2 of their journey. My experience with my neurosurgeons: My experience with Jerry’s neurosurgeons were not positive, I walked away feeling that they are they are scared of GBMs (Glioblastomas). No fault of theirs, I am scared too. My father, a man, who doesn’t go to the doctor looks at me and says “Doctors don’t know everything,” and this was what I needed to hear; now I had some hope. We met with oncology, Dr. Kurt Tauer from West Clinic who said, “If you can get him strong and home, we will help you fight. Nothing is impossible.” I love this man so much because he never thought it was impossible. He never gave up trying to help Jerry. Jerry Turns 30 Now Sunday, 5 days after his seizure and surgery, […]
Jerry Dunaway’s Story, Part 2 Codi is a brain cancer warrior and offering her experience to the Chris Elliott Fund blog. She is a patient advocate for her brother Jerry Dunaway who at 29 years old was diagnosed with Glioblastoma brain cancer. Please join us and follow her story and experience as a patient advocate and brain cancer warrior. If you missed part 1 of her story, you can find it here. The Hospital I walk into the emergency room and he is barely even responding to his surroundings. The nurse asks us to step out so they can check his temperature. Well they did it the not so fun way and he came alive. We all laughed in the hallway and said he is still in there. This moment sticks out in my head since the beginning. ‘The Monster’ Unfortunately though the blood was covering his brain so fast; it caused him to stroke. And by the time they got the first two drains in they were not enough, so they had to go to surgery to do a craniotomy to relive some pressure and put in two more drains. There it was, there was the monster. As we […]
Jerry Dunaway’s Story, Part 1 Codi is a brain cancer warrior and offering her experience to the Chris Elliott Fund blog. She is a patient advocate for her brother Jerry Dunaway who at 29 years old was diagnosed with Glioblastoma brain cancer. Please join us and follow her story and experience as a patient advocate and brain cancer warrior. The first part of the series will tell you about Jerry’s tumor discovery and the initial stages of treatment. We will have 2 more segments over the next two weeks offering Codi’s perspective in her brother’s journey. My name is Codi and I am a brain cancer warrior for my brother Jerry Dunaway. My brother was twenty nine years old in 2011. He was strangely good at everything, everyone loved him, he was handsome, funny, generous, and overall good-hearted person. He was probably one of the silliest people I have ever known. The Last Time I Saw My Brother Healthy Sunday, December 4, 2011, this was my daughter’s 2nd birthday party at chuckie cheese. Little did I know this would be the last time I saw my brother healthy. Unfortunately this would be the last time I saw my brother healthy, […]
Tapas Raha is a 62 year old brain cancer survivor living in Calcutta, India. He would like to share the story of his battle with GBM Grade IV. At the Chris Elliott Fund we encourage patients and caregivers to share their stories so that we can share with others. We aim to help others through information and awareness, including sharing unique personal treatment experiences as a source of inspiration, hope and information. Below is Tapas Raha’s story from diagnosis, to treatment, to the discovery of a recurrent tumor, the exploration of alternative treatments, and ultimately to survivorship. Please read through and share your thoughts with him via the comments below. Do you have a story you’d like to share with our community? Email us at [email protected] UPDATE 3/4/14: As of March 4th 2014, Tapas Raha has updated his story. We’re excited to share his excellent results. His latest MRI, performed on February 14th, 2014, demonstrated a reduction of over 1.2 centimeters in his brain tumor! His tumor is now down to 3 x 2.8 x 2.7 centimeters. Positive results and a cause for celebration with his doctor’s, friends, and family! Tapas attributes his success to the homeopathic treatment path he […]
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