standard-title Effecting Change Blog Here you will get the latest on what is happening with the EBC Initiative.
Effecting Change Blog Entries
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 […]
posted by email@example.com
The EndBrainCancer Initiative Partners with the National Cancer Institute (NCI) for Advocacy, Education and Placement into Clinical Trials for Brain Cancer Patients EndBrainCancer Initiative (EBCI) announces its new partnership with NCI-CONNECT to facilitate engagement with patients with rare CNS tumors (including various forms of brain cancer) and to advance research. 2018 NRG Announcement Press Release (PDF) The EndBrainCancer Initiative (EBCI) is pleased to announce its new advocacy partnership relationship with a program at the National Institutes of Health (NIH), National Cancer Institute (NCI), Center for Cancer Research (CCR), Neuro-Oncology Branch (NOB) called NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors). The program aims to advance the understanding of rare adult central nervous system (CNS) cancers by establishing and fostering patient-advocacy-provider partnerships and networks to improve access as well as approaches to care and treatment. The EBCI partnership with NCI-CONNECT will facilitate engagement with patients with select rare brain tumors. This education and placement will become an expanded feature of the EBCI’s “Direct Connect” Program facilitated by patient navigators. EBCI and its navigators will provide specific educational and clinical trial information to patients and assist them with placement for treatment at the NCI Neuro-Oncology Branch at the NIH and the associated Brain Tumor Trials Collaborative (BTTC) centers. […]
Dellann Elliott Mydland, President of the EndBrainCancer Initiative, to Serve on Two National Clinical Trial Committees for NRG Oncology, an NCI-Funded Research Group As a member of the NRG brain tumor disease site committee, Mydland will advocate for patient perspectives and interests in assessing and recommending specific brain cancer clinical trials for funding to the National Cancer Institute (NCI), helping guide clinical trial design, implementation, recruitment, and reporting approaches, and ultimately supporting critical changes to the standard of care. 2018 NRG Announcement Press Release on PRWEB 2018 NRG Announcement Press Release (PDF) Dellann Elliott Mydland, President and co-founder of the EndBrainCancer Initiative (EBCI), formerly known as the Chris Elliott Fund, has been invited to serve on two national committees of NRG Oncology. Mydland is now a member of the NRG Patient Advocacy (link) and Brain Tumor Disease Site (link) committees. In these capacities as a patient advocate, she will be part of a team reviewing clinical trial proposals and making approval recommendations to NRG as a whole and ultimately to the National Cancer Institute (NCI – http://www.cancer.gov), the overarching funding and regulatory agency. NCI is part of the National Institutes of Health (NIH), an agency of the Department of Health 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 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 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 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 […]
Click here for full PDF version
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 that information with you! Here is a little bit about what we learned… Application for use in cancer for both symptom management and potential cancer cell death. Dr Stella’s lab learned that CBD does kill cancer cells, just not very efficiently. They have created a purely synthetic version of CBD, that is approx. 300 times stronger. There are excellent results in mouse models with this agent. Dr Stella anticipates a phase I human subjects trial opening in approximately 2 years. This is a very exciting development in his life’s work and passion of the past 17 years! CBD kills cancer cells by disrupting the micro-tubules in the tumor cell, preventing cells from dividing. Cannabidiol (CBD) is the medicinal, non-psychotropic component of the marijuana plant. Delta-9 THC is the recreational, plant-based component Read Manuel Guzman’s detailed report here…Canaboids- Potential Anticancer
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 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 […]
It’s not every day that I get the opportunity to speak directly to current and potential future investors who are investing in a new device to treat not only brain cancer but, hopefully, other solid tumors as well. I was delighted when Chair and President, John Butters, asked me to speak last Monday in Seattle at Nativis’ annual shareholder’s meeting. I am hopeful that I was able to “encourage” more investment not only into the Nativis Voyager System, www.Nativis.com, but also into other new and innovative bio-tech & bio-med treatments for brain tumors and brain cancer. The Nativis Voyager System is now in feasibility clinical trials in Seattle, Austin and Long Island, ID #NCT02296580: Seattle: Swedish Neuroscience Institute/Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment. The Principal Investigator is Charles Cobbs, MD. Seton Brain & Spine Institute, TX. The Principal Investigator is Brian Vaillant, MD. Long Island Brain Tumor Center at Neurological Surgery P.C. The Principal Investigator at this site is Paul Duic, MD. For additional information on this trial, please reach out to Deborah Sheffield, MS, firstname.lastname@example.org to Info@ChrisElliottFund.org and/or Info@EndBrainCancer.org, 800-74-5703 10:30a – 3:00p PST. While in DC last month, I had the opportunity to speak directly with Senator Maria Cantwell […]
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 […]
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 […]
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 being treated for testicular cancer. He shared with Chris that he too was in sales and often dropped his cell phone into his lap between using it while driving, which he spent most of his day doing. I can remember Chris and I having a discussion on the possibility of the use this person’s cell phone and “carrying it in his lap” could potentially be a cause of his testicular cancer. Also, many many […]
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 DeEtta@ChrisElliottFund.org 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 orWeCare@EndBrainCancer.com. 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 in the digestive system […]
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 orWeCare@EndBrainCancer.com. 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 WeCare@EndBrainCancer.com.
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 WeCare@EndBrainCancer.org. 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 to suit the centers needs. 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 glassybaby candle holders for sale. A portion of the evenings proceeds went back to CEF. It was a fun evening, with several presentations and toasts from […]
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 WeCare@EndBrainCancer.com. 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 WeCare@EndBrainCancer.com. 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 WeCare@EndBrainCancer.com.
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 WeCare@EndBrainCancer.org. 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. 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 listed condition. Qualifying under the Compassionate Allowance Program Some forms of brain cancer and other types of brain tumors qualify medically for disability benefits under the SSA’s Compassionate Allowances (CAL) program. CAL is an expedited review procedure designed to get you a decision on your eligibility for benefits more quickly. Rather than […]
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 just launched a fantastic new and easy opportunity for shoppers to contribute to their favorite charity! A program called AmazonSmile where .5% of all eligible purchases through smile.amazon.com (Amazon’s site) goes to the charity of your choice. We’ve already set up our account, so you can start making contributions to the Chris Elliott Fund! 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 Chris Elliott Fund. 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@example.com. 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 firstname.lastname@example.org. 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 took, and personally […]
In June of 2005 Lisa graduated from college in four years and was looking forward to beginning a new life and new career. Six months later everything came crashing down. On December 27th, 2005, Lisa was diagnosed with a brain tumor – a Juvenile Pilocytic Astrocytoma in the left thalamus area of the brain; a condition her doctor deemed in-operable. Her initial diagnosis and recovery involved many different medical facilities and doctors. Her nearly eight year journey was very complicated and emotional with many ups and downs. Initially she was treated with 36 rounds of radiation along with chemo therapy. In December 2006 Lisa developed infections (abscesses) from the radiation. We met with her surgeon and he said he could try to remove or relieve the abscess but they would just come back. We left his office not knowing what we should do next. The path Lisa went down resulted with a terminal diagnosis after a year of radiation and chemotherapy. Choosing the right path is critical. Only through prayer and a large amount of luck were we able to find a neurosurgeon at another institution that was willing and able to remove her tumor, although he would have preferred […]
The Chris Elliott Fund (CEF) will be hosting the 12th Annual Celebrity Golf Tournament at Bear Creek Golf Course in Woodinville, Washington on August 5. The event begins at 9am for registration, with an 11am shotgun start and box lunch, followed by an awards ceremony and dinner at the conclusion of the tournament. Several celebrities will be in attendance including: Michael Jackson: Former NFL Seattle Seahawk Linebacker. Charle Young: Former NFL tight end, playing on the Philadelphia Eagles, Los Angeles Rams, San Francisco 49ers and the Seattle Seahawks. Slick Watts: Former NBA guard of the Houston Rockets, New Orleans Jazz and Seattle Supersonics. Cam Cleeland: An NFL tight end for the St Lousis Rams, New Orleans Saints, New England Patriots, and college at the University of Washington. Alonzo Mitz: Former NFL defensive end playing on the Seattle Seahawks and Cincinnati Bengals Randall Morris: NFL Running back for the Seattle Seahawks and the Detroit Lions. Mark Lee: NFL Cornerback for the Green Bay Packers, San Francisco 49ers, New Orleans Saints and college at the University of Washington. Nesby Glasgow: CEF Board member and former NFL safety playing for Indianapolis Colts, the Seattle Seahawks and University of Washington Husky. Clayton Holmes: Former […]
Many thanks to all who participated in the #TuneIn2GBM hashtag fundraiser on Twitter during Brain Cancer Awareness Month in May! Your support not only raised awareness about deadly brain cancers like glioblastoma (GBM), but also $10,000 in fundraising dollars from Novocure to help The Chris Elliott Fund to fight back. The Tune-In to GBM campaign was a public call to action to “Tune-In” during National Brain Cancer Awareness Month. Each tweet using the #TuneIn2GBM hashtag raised a Novocure donation of $5 per tweet (per organization) for the Musella Foundation, the Chris Elliott Fund and CancerCare. Tune-In to GBM was an opportunity for the larger brain cancer community to get involved and give back to those fighting the disease. In just one month, the campaign secured 2,587 tweets with the hashtag #TuneIn2GBM, and more than 700 Twitter members took part in the conversations. Patients, their families, celebrities, journalists and many more lent their voices to the campaign – all together reaching 416,931 followers on Twitter with important messages of hope and support. The Chris Elliott Fund is pleased to have had the opportunity to partner with Novocure and other non-profit organizations dedicated to supporting brain cancer patients and their families. Our […]
Every year the Chris Elliott Fund hosts the Brains Matter Awareness Auction & Celebration Luncheon during the month of May as part of National Brain Tumor Awareness Month. This May of 2013 marks the 3rd Annual event and we at CEF are celebrating another successful luncheon and year with our brain cancer and brain tumor advocacy rockstars. This year’s event CEF honored Kathi Goertzen with CEF’s 2013 Inspiration Award. Keynote speaker David Heyting, brain cancer survivor, patient advocate and CEF board member offered insight into the journey of a brain tumor patient for attendees at the event . The organization also presented the 2013 Hope Award to Holly Zimmerman as well as to David Heyting. This year, the event raised over $34,000 for patient services and expansion of the Patient Services Support Center for the Chris Elliott Fund. Another important part of the event is that it brings many brain tumor and brain cancer patients together for one day of celebration and also to recognition to those who have passed away. In combination with this event and Brain Tumor Awareness Month CEF hopes to bring awareness and educate patients and caregivers about this this disease to help empower other […]
We are pleased to announce the Auction Items that will be offered at the May Luncheon Auction. Your donation as part of this year’s Awareness Auction and Celebration Luncheon will go towards expansion of the CEF Patient Call Center that will extend services and help to a greater number of patients every month. By being a part of this event you are part of the cure! Click the pictures below to view a gallery of the auction items. 1. Weekend Stay at Clearwater Casino Hotel 2. Welcome to Paradise: Hike for up to 4 to Camp Muir/Mt. Rainer 3.Hotel Woodmark Stay & Private Champagne Tasting for 4 4. Glass Vodka Private Gathering Tasting & Heavy Appetizers for 6 5. Dellann’s Salmon Dinner and Lachini Wine Tasting for 8 6. Seahawks Side Line Tour/Tickets for 2 7. Cruise on Lake Union 8. Elliott Crystal Mountain Cabin 9. Sahalee Golf Threesome and Lunch Experience 10. Cigars and Heavy Appetizers with Nesby and Friends 11. Mac the Horse: Large Stuffed Wells FARGO 100th Celebration Pony 12. Port Ludlow Golf, Kayaking and 3 Night Hotel Experience 13. Bear Creek Golf Foursome 14. Leavenworth Sleigh Ride/Lodge Experience Guided by our mission to end brain cancer […]
David Heyting was diagnosed with a tumor in 2011. He is also a Chris Elliott Fund Board Member and the Keynote Speaker for the 2013 Brains Matter Awareness Auction & Celebration Luncheon. Join us on May 16th and a chance to meet David Heyting and hear his experience with brain cancer. An inspiration and wonderful individual. Please take a minute and read David’s Story below. David’s Story On November 8 of 2011, I suffered a grand mal seizure. But I was lucky. It seems funny to say that I was lucky considering I had a grand mal seizure, but the truth is that I was. That afternoon, I was at a Starbucks in Seattle, less than 2 miles from the University of Washington Medical Center, having a client meeting for my work, when I fell out of my chair and onto the floor. The seizure ensued. Based on the location, of course UW is where the ambulance took me. UW is a research hospital and has partnerships with other medical institutions in the Seattle area. For example they are involved with the Seattle Cancer Care Alliance, which combines the knowledge of UW, The Fred Hutchinson Cancer Research Center and Seattle […]
This year we will be honoring Kathi Goertzen with the 2013 Inspiration Award at our 3rd Annual Luncheon. We hope you can join us for this special day of awareness and celebration. The Chris Elliott Fund has several signature events it hosts every year. One of the most exciting is our annual Brains Matter Celebration & Awareness Luncheon where CEF gets to honor those who are inspiring and bringing awareness to brain cancer and brain tumors. We also get to celebrate those who are fighting and have fought this disease. One of those who will be honored is long time Western Washington news anchor Kathi Goertzen, who lost her battle due to complications from her brain tumor in August of 2012. Her husband and daughters will be accepting CEFs Inspiration Award for her and her family’s vital work to work towards inspiration, hope and a cure through her fight with brain tumors and the Kathi Goertzen Foundation. Please join us on May 16th at the Bellevue Club from 11 a.m. to 1:30 p.m. where you will enjoy a champagne reception with the CEF team and all those celebrating with us, in addition to an award ceremony and keynote speaker David Heyting […]
At Chris Elliott Fund, we try and find new ways to reach out to the brain tumor community far and wide. So we started something new this year and it’s been a great success: our Brains Matter Webinar Series. These free webinars bring together the brain tumor community and specialists to engage on topics that our patients have told us are most important to them. Our first Brains Matter Webinar, held in January was terrific. A big thanks to our guest speaker Dr. Gregory Foltz, who was on hand to give expert advice on the most important questions you should ask your doctor when diagnosed with a brain tumor. We all know knowledge is power; knowledge can alleviate fears, empower decisions and most importantly change outcomes. And that’s what we are looking to do with our Brains Matter Series, change outcomes. So please join us for our next webinar on February 28th for the webinar: “A Brain Tumor Patient’s Guide to Insurance and Financial Resources“, where we approach the difficult subject of insurance and finance as they pertain to the brain tumor patient. This is an educational opportunity for brain cancer patients, caregivers and the general public. We are lucky to […]
At the Chris Elliott Fund, we try and find new ways to reach out to the brain tumor community far and wide. So we started something new this year and it’s been a great success: our Brains Matter Webinar Series. These free webinars bring together the brain tumor community and specialists to engage on topics that our patients have told us are most important to them. Our first Brains Matter Webinar, held in January was terrific. A big thanks to our guest speaker Dr. Gregory Foltz, who was on hand to give expert advice on the most important questions you should ask your doctor when diagnosed with a brain tumor. We all know knowledge is power; knowledge can alleviate fears, empower decisions and most importantly change outcomes. And that’s what we are looking to do with our Brains Matter Series, change outcomes. So please join us for our next webinar on February 28th for the webinar: “A Brain Tumor Patient’s Guide to Insurance and Financial Resources“, where we approach the difficult subject of insurance and finance as they pertain to the brain tumor patient. This is an educational opportunity for brain cancer patients, caregivers and the general public. We are lucky […]
In Loving Memory of John Brace: 1958 – 2017 My name is John Brace. I’m a 10 year Glioblastoma brain cancer survivor. In 2002 my doctor told me I had 18 months to live. I was 43 and in the prime of my life. Stunned, I looked at my doctor and said “NO, not me!” I thought to myself “I have so much more to do!” I planned to see my 2 daughters through college. I was going to walk them down the aisle. When you get news like this you have to face it head on. I asked the doctor, “How many survive this?” The answer was not encouraging, “Only 3% make it past ten years.” I was determined to be a survivor. I knew I needed to be one of the 3 percent. I wondered what was common about that group. What would be the secret to achieving 3 percent? I thought about it and researched it, thinking my life may depend on the answer. My doctor said there are 3 things common among survivors. He listed: 1. Access to good medical care and assistance from the Chris Elliott Fund, www.ChrisElliottFund.org 2. A good support group of […]
We are excited to announce a brand new educational opportunity for brain cancer patients and caregivers! The Brains Matter Webinar Series which will be a monthly program offering educational and support information on the newest treatment available for your brain cancer or brain tumor. The webinars will also offer care resources and education in helping the ones you love with a brain tumor or brain cancer. Below is details on this month’s first webinar: Brains Matter Webinar Series: “Top 10 Vital Questions You Must Ask Your Doctor IMMEDIATELY When Diagnosed with a Brain Tumor” When: January 17th 2013 at 11:00am to 12:00pm PST Where: Your computer or phone, sign up to virtually attend this webinar Who: Dr. Greg Foltz, Neurosurgeon and Director of the Ivy Brain Tumor Center at the Swedish Neuroscience Institute of Seattle, WA Dellann Elliott, Founder and President, Chris Elliott Fund Maria Barrett, Health Information Concierge , Chris Elliott Fund What: The rush to learn as much vitally important information once diagnosed with a brain tumor is easily overwhelming. We’d like to help simplify and demystify this process by sharing the 10 most important questions to ask your neurosurgeon or neuro-oncologist once diagnosed with a brain tumor. […]
We at the Chris Elliott Fund are excited to announce the ending of a huge year for brain cancer education, awareness advocacy and support (and check out our year end press release HERE). We sent 2012 off with a bang adding several new programs and expanding several old programs. We are also taking huge steps in 2013 towards organizational growth. Below is what we did in 2012 and what we hope to do in 2013: 2012: Patient & Caregiver Database Growth with New Educational Conference This year was very productive for CEF continuing old projects, taking on new opportunities and expanding its services and outreach to an even greater length: Taking on a larger patient database after the National Brain Tumor Society appointed the Chris Elliott Fund as the “National Voice” for Brain Cancer Patients in September of 2011 A successful Brains Matter Education and Awareness Patient and Caregiver Conference Welcomed several fundraising efforts from Richland, WA to Orlando, FL to New Orleans, LA Continued partnership with the Seattle Brain Cancer Walk, with new partner and brain cancer survivor David Heyting and Maria Barrett’s Warriors4Dad Successful Signature Events: the 2nd Annual Brains Matter Awareness and Celebration Luncheon with New Day NW’s […]
This is Part Two of our Blog post regarding Choosing the Right Care Facility for Your Loved One. We posted Part One on December 17th. We asked Abby Durr of SilverAge, LLC in Washington state, five questions about important aspects to consider when choosing a care facility for your loved one. The last three questions are below and Abby has given us some valuable tools to consider when making these difficult and emotion-filled decisions. 3) What tips can you give our readers as to how to discuss this topic with their loved one? Start the conversation early! Remember it’s a process! Don’t expect to solve everything with one conversation. Family meetings rarely work. Individual conversations with key family members tend to be more productive. Make sure everyone has a voice and their voice is heard. Listen, listen listen to your loved one and ask good open ended questions. Put yourself in their shoes and realize that their biggest present task is to leave their legacy. During the whole transition be sensitive to this and help them preserve their dignity. Involve the person who needs care to be a part of the decision as much as possible, it is […]
There have been many challenges over this past year of my own father’s Glioblastoma brain tumor diagnosis. There are so many different topics to research and learn about when caring for your loved one. Sometimes we are lucky enough to find someone who has done a lot of the research for us and can lead us in the right direction, without re-inventing the wheel. The struggles are many in this journey with brain cancer, but one of the hardest decisions was seeking out a care facility for my dad when the caregiving job became too much for my mom. We all wanted to do the job, but dad’s needs grew exponentially it seemed between June and September and by the time he was discharged from the University of Washington Rehab Program, here in Seattle, the reality of his needs became very apparent. We were educated about some of these options by the staff at the UW, but it was another specialist in our area that I had been given the name of that really put me on the right path. Enter Abby Durr, Housing and Care Specialist from Silver Age LLC. Abby knew the area we were interested in quite well on […]
The Chris Elliott Fund is pleased to announce the success of two awareness and fundraising events for the Chris Elliott Fund in October, 2012. Florida based Turning Up the Heat on Brain Tumors and Tri-Cities, WA based Zombie Walk for Brain Cancer were made possible by 100% volunteer effort and support, and demonstrate the tremendous impact passion and hard work can do for a cause. The two fundraisers planned through local, volunteer support, reinforce that making a difference can come in many shapes and sizes. Florida based Turning up the Heat on Brain Tumors and the Tri-cities Zombie Walk, Zombie walk for Brain Cancer in Richland, WA together raised over $2,100 and extended much needed awareness and education to the events combined 400+ attendees. With this disease “awareness is key, it is severely underfunded and unknown disease, the more people know about it the more can be done to find appropriate forms of care, research and solutions to these swift diseases.” Says Dellann Eliott who started the Chris Elliott Fund in a similar way, identifying ways she could make a difference, garnering support and working towards an important cause. Both events are made possible by the great volunteers but […]
The Chris Elliott Fund’s (CEF) Dellann Elliott was one of 200 cancer advocates, doctors and survivors invited to attend a day of collaboration and brainstorming for the future of cancer care &research. This conference was created by Genentech and LIVESTRONG–two leaders in the fight against cancer–and hosted in Austin, Texas on October 18th 2012. An outlet for organizations to collaborate and accelerate idea exchange and cancer solutions, the conference identified new and innovative ways to fight all types of cancers including the Chris Elliott Fund’s focus: brain cancer. For the Chris Elliott Fund, this was a conference “that affirms the work we’re already pursuing as a brain cancer patient advocacy group focused on patient care,” said CEF Founder & President Dellann Elliott, “For me it was an honor to be one of 200 people nationwide to guide the direction of cancer care to where it will improve cancer survivorship and ultimately, save lives.” The LIVESTRONG Foundation’s Vice President of Strategic Partnerships, Heidi Adams talks about the forum’s outcome, in an article in LIVESTRONG Quarterly (2012): “We want to catalyze action. Not just sit around and talk about something, but actually develop ideas and strategies to move the needle on this […]
More than 65 million people in the United States provide care for chronically ill, disabled or aged family members or friends during any given year. Those 65 million people spend 20 hours a week providing that care. That care is valued at $375 bilion a year, which is almost twice as much as is spent on homecare and nursing home services combined. (Source: The National Family Caregiver Association) 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. “The theme for this month of November is BELIEVE in yourself… PROTECT your health…. REACH OUT for help. month there is a special emphasis on the need for all of us to help family caregivers protect their health in order to have a more satisfying life and be better able to provide their loved one with the best care possible.” (Family Caregiving 101) As one who has been caregiving for my own father off and on over the past year, I know first hand the importance of this job. I also know the support that is […]
Aloha! In April of 2009, my wife, Linda, was diagnosed with Glioblastoma after undergoing a craniotomy in Honolulu. Living on Maui we had difficulty understanding treatment alternatives, consequences, and impacts of this cancer, and generally how to get the best possible care for her. In May of 2009, Linda’s cousin, Char Smick, referred us to Dellann Elliott, who collected our information and put us in touch with, among others, Dr. Patrick Wen. After reviewing her records, Dr. Wen called me to discuss possible treatment options, and asked if Linda would be willing to meet him and/or Dr. Foltz in Seattle to examine the possibility of a follow-up craniotomy. He then interviewed our neurosurgeon in Honolulu and called me back to advise that he felt Linda had gotten excellent treatment there. He suggested that after the initial prescribed radiation and chemotherapy treatments, we should request that she be given Avastin, which studies had shown to extend the life of Glioblastoma patients by months, but had not yet been FDA approved for brain cancer. By August of 2009, Avastin had received FDA approval and Linda started receiving infusions every two weeks at the local Kaiser facility on Maui. She continues to receive […]
- Bed & Breakfast
- brain cancer
- Brains Matter
- Breast Cancer
- Chris Elliott Fund
- End Brain Cancer Initiative
- patient advocacy
- Patient Support
- Society of Neuro-Oncology Annual Meeting
- Together Newsletter
- Webinar Series
- Wine Tasting
- GBM Patient & TOGETHER Day to Honor and Uplift Brain Cancer Patients on Friday, March 15th
- The EndBrainCancer Initiative Partners with the National Cancer Institute (NCI) for Advocacy, Education and Placement into Clinical Trials for Brain Cancer Patients
- Dellann Elliott Mydland, President of the EndBrainCancer Initiative, to Serve on Two National Clinical Trial Committees for NRG Oncology, an NCI-Funded Research Group