Living Your Legend: Blog

 Abstract: Navigating care for patients with cancer can be overwhelming considering the multiple specialists they encounter and the numerous decisions they must make. For patients with glioblastoma (GBM), management is further complicated by a poor prognosis, feelings of isolation, urgency to treat, and cognitive decline associated with this rare and progressive disease. For these reasons, it is imperative that shared decision-making (SDM) be integrated into standard practice to ensure that the risks and benefits of all treatments are discussed and weighed with the patient’s expectations and goals in mind. In this manuscript, the importance of SDM in GBM and the potential benefits to the practice and patient are discussed from the unique perspective of advocacy leaders. Their insights from interactions with patients and caregivers provide a template for empowering patients, improving patient-physician communication and understanding, and reducing patient and caregiver anxieties. Ultimately, increased SDM may lead to a better quality of life and improved treatment outcomes.  Keywords: patient advocacy, advocacy organizations, patient-centered care, brain tumor, oncolo Read The Full Published Article Here: Shared Decision Making Article

To all our Supporters, Friends and Colleagues and especially to the Patients and Caregivers we serve and to the Healthcare Workers who tirelessly work on behalf of all of us! First of all, I want to take this opportunity to mark the passing of a momentous year and wish everyone a much better 2021. It certainly has been quite the ride! I want to start off 2021 by sharing exciting news from Corporate Partner GT Medical who offer a truly groundbreaking treatment for those undergoing surgery for their brain tumor in the form of safe and effective surgically targeted radiation delivered right to the tumor site. I personally believe that GammaTile Therapy is a game changer for patients with malignant brain tumors and would like to personally congratulate those centers achieving ELITE status in 2020: Memorial Sloan Kettering Cancer Center University of Minnesota M Health Fairview HonorHealth Scottsdale Osborn Medical Center NorthShore University HealthSystem Mayfield Brain & Spine Read the full press release HERE. I am looking for these numbers to increase exponentially in 2021. Because it means that far more patients with brain tumors will start off their journey with radiation that’s targeted to their tumor and is much less debilitating. […]

Hi guys!  One of my most favorite things to do under my leadership of the EndBrainCancer Initiative is to talk directly to patients with brain cancer and to hear first hand, “their story” and to “see” with my own eyes as well as to “hear” with my own ears how they IMPACT others simply by the way they are living with and fighting their brain tumor. I see such amazing Courage and Inspiration every day from patients with brain cancer and now, I want to meet them and share their stories with all of you and pick one of them to honor at this year’s EBCI National “HOPE” Award. Due to COVID-19, our National “HOPE” Award, sponsored by www.Novocure.com, was not presented in May like it usually is during our annual “Brains Matter” Education, Awareness & ACTION Event as we had to reschedule this event to July 30th.  Now, also due to COVID-19, this event is now cancelled but NOT our National “HOPE” Award Initiative!  WE ARE GOING FORWARD WITH THIS AWARD COME LOW OR HIGH WATER! We are seeking nominations for this award and now, with the launch of my weekly “Having a Say” Zoom Video Meeting Series, I […]

Today, it is May 17, 2020 and I am spending my day reflecting on the national brain tumor community.  Specifically, I am also spending a lot of time over the last several weeks, amongst COVID-19, reflecting on the my late husband’s brain cancer journey and the last 18 years of co-founding and running the Chris Elliott Fund, now DBA EndBrainCancer Initiative.  Geez, I cannot believe it has been 18 years since Chris and I established the then “Chris Elliott Fund” with the goal of not only funding very KEY research related to genomics and targeted therapy for Glioblastoma Multiforme, also known as GBM brain cancer but also for the purpose of providing IMMEDIATE ACCESS for other brain tumor/brain cancer patients to brain cancer specialists, such as world renown brain tumor neuro-surgeons, such as Dr. Mitch Berger, IMMEDIATE ACCESS to Brain Tumor Centers noted for their Excellence as well as to specialists that are neuro-oncologists in the brain cancer space as well as to Principal Investigators involved in brain cancer clinical trials.  I am beyond proud of what we have accomplished with my late husband’s request, “Do Something About this Disease”.  Gosh, in many ways, I feel like we have just […]

Thank you so much for your interest in submitting your story for my collaborative book.  First, let me tell you more about myself and my mission and purpose for this book. In my  daily life, I am the co-founder, President and Chair of the EndBrainCancer Initiative (formerly the Chris Elliott Fund) www.EndBrainCancer.org.  My late husband, Chris Elliott, and I formed this organization 17 years ago to specifically assist brain tumor/brain cancer and patients with brain mets to work with specialists, encourage them to have their tumor tissue saved and comprehensive genomic testing done on that tissue to inform and increase effective personalized treatment options as well as to improve health policy and increase immediate access to effective treatment options.  It has been a rough road to financially support all of these efforts via programs and services that are free to the patient/caregiver and the families we serve as well as amazingly empowering to know you are helping others as well as changing policy for all cancer patients. Fast Forward: While editing and writing a chapter for the bestselling book by author and life coach Lisa Reck, Breaking Through the Storm,  I had one of those “aaha” moments and realized that perhaps the […]

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 […]

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 […]

  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!    

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!      

  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 […]

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 […]

  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 […]

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, 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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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. […]

As you are most likely aware, Chris Elliott Fund strongly advocates that all brain tumor patients be given IMMEDIATE ACCESS to the most advanced and most appropriate FDA-approved treatments for their particular disease.  Yet, CMS and DME coding and other classification issues continue to create significant roadblocks for certain groups of patients, effectively denying them access to potentially life-saving treatments. We have just submitted the attached letter to the U.S. Department of Health and Human Services (Gliadel Coding Problem Letter 06-20-14). in response to a classification issue around Gliadel wafers.  However, we are just one voice, and need others to join us in reversing current policy.  These letters must be received by June 30 to be in time. You can join CEF and make your voice heard in one of two ways: Write a similar letter to CEF’s (must be received by June 30th).  We will be happy to assist you with this.  Furthermore, if you would like CEF to overnight it via USPS on your behalf, all letters need to be emailed to [email protected] by midnight this Wednesday so that we can get them out early this TH morning for arrival early on Monday June 30th. Note that the letter will need […]

Below is the ninth brain food in our 10 part series on recipes for your brain: Tomatoes. Do you find yourself trying to find the right diet combination during or post treatment? Ask the Chris Elliott Fund, we can help plan a diet around healthy brain foods. Call, email or leave us a note today: 1-800-574-5703 [email protected] The importance of lycopene rich foods like tomatoes has been documented for some time. It is mentioned in literature related to oxidative stress, which may play a role in the causation of the disease. Brain health studies have actually identified lower levels of plasma/serum lycopene in brain impaired individuals. Key Nutrients Tomatoes contain several components for good brain and overall health including: Vitamin C Vitamin A (as carotenoids) Fiber Potassium Lycopene Of course, as in most discussion about epidemiology, nutrition and health, there are always naysayers.  As in all nutritional advice, tomatoes are tomatoes be including in a brain function enhancing and cancer fighting diet as well as other deep colored fruit and vegetables. We know cooking and preparing these brain foods can get complicated especially if you are balancing treatment, family and work.  We wanted to provide easy and simple recipes to help you start preparing […]

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 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.

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.

The Chris Elliott Fund has been a 501(c)3 non-profit, an organization devoted to brain cancer patient advocacy and advancements in patient care, for 11 and a half years. But until now we have not had a formal Patient Support Services Center. Grand Opening In July of 2013 we moved into our new Redmond, Washington offices. Previous to that we were operating for one and half years out of a shared office space at JMS Construction, who donated 2 small offices. The new office spaces are just down the street from the old Willows Road space, on 95th Street. Our current address is 14959 Northeast 95th St., Redmond, WA 98052 Between July of 2013 and the end of the year we spent several months updating and renovating the space and finding new office furniture to suit the needs of the center. For instance, we have purchased some brand new adjustable office chairs and desks for our administrative staff and receptionists. The official grand opening and ribbon cutting was held on January 3rd 2014. The event was open to the public. We were pleased to have Foundation Medicine present as a sponsor of the event as well as a glassybaby roadshow, offering […]

We are introducing a new 10 part series on recipes to promote brain health brought to you by our Health Information Concierge. Below is the third brain food and recipe in the series. Do you find yourself needing help finding the right diet combination during or post-treatment? Ask the Chris Elliott Fund, we are here to help you in your process to plan a diet plan around foods that are healthy and good for the brain. Call or email today: 425-444-2215 or  [email protected] Brain Food #3: Avocados

We are introducing a new 10 part series on recipes to promote brain health brought to you by our Health Information Concierge. Below is the first recipe in the series. Are you needing help finding the right diet combination during or post-treatment? Ask the End Brain Cancer Initiative, we are here to help you in your process to plan a diet plan around foods that are healthy and good for the brain. Call or email today: 425-444-2215 or  [email protected] Brain Food #1: Wild Alaskan Salmon – rich in Omega-3 fatty acids, salmon helps keep the brain humming along smoothly, boosts memory and helps us focus. Below is a health recipe that incorporates this brain food and incorporates many other healthy ingredients.

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 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 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 […]

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 […]

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 […]

  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 […]

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 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 […]