The skilled surgeons at OHSU removed the tumor a couple days later and most of us felt it was a close call, assuming they had removed the tumor and Christy would be fine and make a full recovery. When I was unloaded, she was not prepared for what she saw. My mom, brother and sister came to live with us for the last two weeks of my life to help care for me and to say good bye. She would offer to go and get me things or do things for me, but I didnt want to give in to the brain tumor, so I insisted that I do things myself. We aim to help others through information and awareness, including sharing unique personal treatment experiences as a source of inspiration, hope and information. In 1998, I joined several of my colleagues in setting a goal to double NIH funding within five years. We all have ideas in our heads, some of them are better than others, but it is not for us to decipher which ones are good or great, but to take action on all of them and see which ones grow and become something bigger, maybe something bigger than we could have ever imagined. It was no surprise that in late April, another tumor was spotted. My mother and brothers are warriors, as we all work together to help my dad fight his brain tumor. Five weeks ago, the Chris Elliott Fund (CEF) received restricted funds/grant to be used exclusively for new website development and ongoing web support. At times caregivers forsake their needs for the needs of others. 13 talking about this. He and his family refused to give up until they found better treatment options outside of standard protocol. The EndBrainCancer Initiative / Chris Elliott Fund serves patients for Free. There was not a mean bone in his body. Access to good medical care and assistance from the Chris Elliott Fund, www.ChrisElliottFund.org 2. I explained to her that I felt like I had the flu, told her about the strange smells and thought that I needed to go inside and lay down. They were there in tandem, putting faces and names to what we are learning is the most deadly form of cancer: glioblastoma brain cancer. The observations, reported by two separate teams online inNature, could explain why drugs designed to choke off blood to brain tumors often fail. Experiments on Glioblastomas These researchers drew a link between tumor cells and blood vessel cells with a series of experiments on Glioblastoma tumors. Dellanns Salmon Dinner and Lachini Wine Tasting for 8 6. This is where the Chris Elliott Fund comes into play. I played a lot of golf, played and enjoyed my children so much, appreciated my wife and life more than I had ever before, made many more happy memories with my family and started the experimental drug therapy, Gleevec. I wondered what was common about that group. These independent experts point out that the FCC wireless regulations on cell phone safety are largely based on something called specific absorption rate (SAR) levels, or the rate at which our bodies absorb radiation. My brother was twenty nine years old in 2011. All of the work our caregivers have done and continue to do is inspirational and deserves recognition. Choosing the right path is critical. My father was diagnosed with a brain tumor in March 2010. She then went downstairs to fix the kids dinner. Looking Back on 2012 and Our Goals for 2013the Year of the Brain Tumor Advocacy Rockstar! They couldnt hold me down anymore. I had fought the good fight and now I wanted to do more. Attending a support group can be a very helpful and valuable addition to anyone who is facing a brain tumor diagnosis or caregiving for someone who is. There is much to celebrate! It was really a difficult time. Heck, the sooner I get through surgery and recover, the sooner I could return to my wonderful life. Swedish Health Services, the largest nonprofit health-care provider in the greater Seattle area, announced that they would be replicating theIntegrated Patient Support model, developed by CEF, across their various institutes of health to better provide for patient needs and to integrate holistic care. It begins by stating, Tumors are notoriously hard to kill. If you are still losing ground, talk to your physicians about the following appetite stimulants: 1-Liquid Megace 800 mg/day x 30 days then decrease to 400 mg/day. 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 theNational 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 Barretts Warriors4Dad Successful Signature Events: the 2nd Annual Brains Matter Awareness and Celebration Luncheon with New Day NWs [], We are excited to announce a brand new educational opportunity for brain cancer patients and caregivers! I should have been in a wheel chair, but I wasnt ready for that. Twive and Receive represents a powerful statement about this countrys generosity. Ive got my health, am still very athletic, have good lifelong friends in my life and have had much success in the telecom industry. It says January 19th vs January 16th. He listed: 1. So, I tried to pull the breathing tube out! So where do you turn and whom do you believe? Initially she was treated with 36 rounds of radiation along with chemo therapy. Well, it wasnt to be like that. Calling All Zombies! We are are at capacity now in responding to this calls for help and know that now that the NBTS has closed their Patient Support Services Program and Help Line, we are anticipating another 1,000+ inquiries per month to come in. I pray for a cure for Glioblastoma and I thank all of you who continue to donate and participate in CEF events and especially, the annual golf tournament that honors me. Jerry Turns 30 Now Sunday, 5 days after his seizure and surgery, [], Our sons Journey (our journey) with brain cancer (Glioblastoma Multiforme) began on March 1st, 2008. Unfortunately, in the years after we doubled the funding, NIH received flat funding that did not allow it to keep up with previous gains. 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. 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 Kims story with you. Cure in our Lifetime. DONATE Case for Change Volunteer Contact Consider becoming a sponsor and making a lasting contribution today. 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. So, I just leaned on Dellann and we struggled with a plane change and delay, but finally, we made it to Boston. 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 [], Many thanks to all who participated in the #TuneIn2GBM hashtag fundraiser on Twitter during Brain Cancer Awareness Month in May! Enhancing patient outcomes by expanding FDA-approved treatment modalities and fueling research in the pharma/bio/life sciences, device & diagnostic industries and by closing the existing GAP from initial diagnosis to IMMEDIATE AND EXPANDED ACCESS to specialists, researchers, advanced & innovative treatments, clinical trials and critical care with the ultimate goal of improving patient outcomes through updating and improving WHO & NCCN Guidelines and clinical practices related toStandard of Care for brain cancer patients. I had walked up from the beach to the condo by myself and fell on a 2-ft. wall make out of lava rock. By just talking and spreading the word, you too can help EBC succeed. I was shocked, as I didnt think I was creative and didnt know the first thing about art. Additional Guest Speakers include our afternoon Keynote, Inspirational Speaker Greg Cantwell, Beverly Goldsmith from Providence Hospice, Laura Benson from Novocure,, Nick Boyle from Tocagen, and our Founder/President Dellann Elliott as well as myself, Maria Barrett, Health Information Concierge for [], September 21st provided a Day of HOPE, Education, and Awareness for the Northwest Brain Tumor Community. 6)Brain tumors are the second leading cause of cancer-related deaths in people under the age of 20, the second leading cause of cancer-related deaths in males aged 20-30, and the fifth leading cause of [], There are sixty-five million Americans who care for an elderly or disabled loved one, a role that can be extraordinarily taxing, both physically and emotionally, pushing many of these people to find senior home care for their loved one to give them a break. In order for physicians to take the appropriate further medical actions to treat the brain tumor the level (or stage) of the brain tumors is required. They spend their days working with brain tumor patients, their families, their caregivers, and working within the walls of their highly constricted political systems, and somehow break through to really make a major difference with this disease as they truly become part of the cure. His writing has won four consecutive Primetime Emmy Awards. 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 [], David Heyting was diagnosed with a tumor in 2011. This heroic work is often done while caregivers balance other commitments to their families, jobs and [], Sheila Lang nominated her father Frank Vinson Sr. Frank was 79 when his son Lynn was diagnosed with Glioblastoma. 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. Duke also follows the model for integrated patient support and care which is so important in our battle to beat this disease. But the issue remains that radiation must pass through healthy brain tissue to reach the tumor, and patients can only tolerate small amounts before developing serious side effects. 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 [], Tapas Raha is a 62 year old brain cancer survivor living in Calcutta, India. In a career spanning more than 35 years, he started off as a standup comedian, then moved to writing, and finally got into acting as well. On May 5, 2010, our first appointment was made with a doctor at the UW. Barbecuing hamburgers and eating outside sounded like the perfect way to end a perfect weekend. Dellann will tell you that the next many hours were some of the longest and most heart-wrenching ones she has lived. Lets look at RF levels instead Note that mounting scientific evidence suggests that nonthermal radio frequency radiation (RF)-the invisible energy waves that connect cell phones to cell [], I read this article and wanted to blog about it. We made the decision to call in Hospice and discuss how I wanted to die at home and made arrangements for that. 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. I feel the compassion of my friends and family when they contribute to me and to TEAM CEF to fight this cancer; they send in funds to support promising new science/research and to TEAM CEF to support patient support services, a dedicted social worker, patient and caregiver support groups, Education & Awareness Hours and patient handbook resources. The release is below: Glioblastoma Multiforme Brain Cancer Survivor Inspires Us All To Have Hope And Believe John Brace is one of the 3% that survived this disease Medicine, Meditation, and Attitude may hold the key John Brace, Glioblastoma Survivor8 years Glioblastoma Survivor John BraceJB Skiing 2010 JB Skiing 2010 SEATTLE, WA, April 02, 2010 /24-7PressRelease/ John Brace (JB) was a normal guy with a stable job, wife, two kids, and a house with a picket fence. I KNOW I had it good. Last year, it was also the first center in the Southeast to begin enrolling patients in a new late-stage clinical trial for the treatment of glioblastoma multiforme using a personalized cancer vaccine. 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. My sons genetic markers showed that he was in the group that Temodar []. November is National Caregiver Month. Currently trained sites Dr. Eric T. Wong, Beth Israel Deaconess Medical Center in Boston, Massachusetts Dr. Lisa DeAngelis, Memorial Sloan Kettering Cancer Center, New York, New York Dr. Jay-Jiguang Zhu, Mischer Neuroscience Institute in the Memorial Hermann Hospital, Houston, Texas Dr. Joseph Landolfi, New Jersey Neuroscience Institute at JFK, Edison, New Jersey Dr. Herbert Engelhard, University of Illinois Hospital in Chicago, Illinois Dr. Andrew Lassman, NewYork-Presbyterian/Columbia University Medical Center, New York, New York Dr. Santosh Kesari, University of California San Diego Moores Cancer Center, San Diego, California Access to cutting-edge treatments like NovoCures NovoTTF means more options and more hope for patients battling brain cancer. After discovering the tumor, they rushed her to the Neurologists at Oregon Health Sciences University in Portland. There are specialists applying the best science and standards to help patients. I walked out of the building that day thinking: How did I not know this? I remember that she gave me the Fathers Day present that she had made for me, read me stories and then continued to sit by my bed and write in her journal until she went outside to play that afternoon. Here are our 2011 CEF HIGHLIGHTS: Maria Barretts Testimony for The Elliott Foundation/Chris Elliott Funds Work, Mission & Vision The Importance of Knowing About Genetic Testing of Ones LIVE Brain Tumor Tissue Before You Need to Know It! A couple of weeks ago I blogged about Jean [], SEATTLE March 10, 2010 Greg Foltz, M.D., director of the Ben and Catherine Ivy Center for Advanced Brain Treatment at Swedish Medical Center, has published a major eight-page feature article in the March/April 2010 issue of the scientific journal Scientific American MIND titled New Hope for Battling Brain Cancer. The article, which can be purchased online here, is a comprehensive overview of the various brain cancer studies and research that suggest stem cells sustain deadly tumors in the brain and that aiming at these dangerous culprits could lead to a brain cancer cure. Last year alone, 406 patients and 259 caregivers received individual and comprehensive support at []. However, after several days of recovery and a week in an in-house rehabilitation center and hours of physical and occupational therapy, the only thing that was different or remained from my surgery was a slight limp and of course, I was minus one brain tumor. Family caregivers often find themselves teetering by a thread. They report higher levels of stress, physical strain and poorer health than non-caregivers. More people are getting the news60 people heard those words todayyou have brain cancer. Thank you to each of you for that gift. I knew I needed to be one of the 3 percent. I have no appetite. Thank you for understanding. Dellann, the kids and I spent another great week in Maui relaxing, playing and enjoying the place that we were fortunate enough to call our second home. Kim was diagnosed with Glioblastoma brain cancer. 1d ago. I slowly slipped into a coma, although, I was aware of the many friends who did come by to tell me that they loved me and to say goodbye. It can be used as an opportunity for family caregivers to run errands, travel or just enjoy a well-deserved night out. Know that you are not alone. We are starting 2012 with an expanded vision, a new name, and a new look. You DO such an important job and as I sit and listen to your talk show and reflect upon our conversations, I see your drive to get this information out to people BEFORE theyve passed that vital stage of surgery. I believe we cannot stop advocating for a cure, for those with brain cancer and their families, when these aggressive cancers still remain a mystery. The Chris Elliott Fund is furiously committed to finding a cure for brain cancer and to bringing HOPE to the lives of patients and their families. Margaret Larson, award-winning journalist, news anchor, and host ofKING 5 New Day NW, lost her brother-in-law to glioblastoma brain cancer and knows personally how brain cancer can strike suddenly and take so much. For those of you who know me, you know that if there was a possibility for anyone to beat the odds, I would have been that person. (i[r].q=i[r].q||[]).push(arguments)},i[r].l=1*new Date();a=s.createElement(o), But I was lucky. We all know knowledge is power; knowledge can alleviate fears, empower decisions and most importantly change outcomes. Frank has been Heathers rock and source of support through this process. So, I came home to spend time with Riley and Hunter and tried to complete projects that needed to be done so that I could rest and know that my family would be taken care of. So please join us for our next webinar on February 28th for the webinar: A Brain Tumor Patients Guide to Insurance and Financial Resources, where we approach the difficult subject of insurance and finance as they pertain to the brain tumor patient. 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. We are patient advocates in the fight against brain cancer. Help like this allows family caregivers to rest or attend to other responsibilities without worrying about their loved ones wellbeing. In August 2010 Brad lost a two-year battle with brain cancer. The Chris Elliott Fund/The Elliott Foundation has provided key research funding for the past 10 years in support of The Chris Elliott Neuro-Oncology Lab at Dana Farber named in his honor and an important part of his legacy. (Source: The National Family Caregiver Association) November is National Family Caregivers Month! In April, the FDA approved NovoTTF device as a new treatment option for brain cancer. Thats why CEF will soon embark on a national public awareness campaign to end brain cancer. We hope you canjoin us for this special day of awareness and celebration. Rainer 3.Hotel Woodmark Stay & Private Champagne Tasting for 4 4. If you think that you are due SSD but you havent received any, then it might be a good idea to involve Social security disability attorneys in your case. Please join us and follow her story and experience as a patient advocate and brain cancer warrior. I am reaching out to ask for your help and support. This years event CEF honored Kathi Goertzen with CEFs 2013 Inspiration Award. More than ten years later, through Dellann Elliotts hard work and the dedication of countless volunteers & supporters, Chris legacy lives on through Chris Elliott Fund. My family and I were up at our cabin at Crystal Mt. 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. The Chris Elliott Fund (CEF) is a brain cancer and brain tumor patient advocacy organization and national 501(c)(3) non-profit with offices in Redmond, Washington. Dr. Kesari has done such amazing work within neuro-oncology that I did not even know existed. The first part of the series will tell you about Jerrys tumor discovery and the initial stages of treatment. Charle Young: Former NFL tight end, playing on the Philadelphia Eagles, Los Angeles Rams, San Francisco 49ers and the Seattle Seahawks. Please join us and follow her story and experience as a patient advocate and brain cancer warrior. http://chriselliottfund.org/getinvolved/donate.html Even a relatively modest sum can go a long way in supporting the work we do. For the Chris Elliott Fund, this was a conference that affirms the work were 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 Foundations Vice President of Strategic Partnerships, Heidi Adams talks about the forums outcome, in an article in LIVESTRONG Quarterly (2012): We want to catalyze action. This money allowed for more NIH-funded research at research facilities through the [], Over 60,000 brain cancer patients, family members, and caregivers received vital information and support about advanced brain tumor treatment and access to advanced treatment centers known for their excellence. With profound compassion and selflessness these caregivers sustain American men, women and children at their most vulnerable momentsduring National Family Caregivers Month we pay tribute to individuals throughout America who ensure the health and well-being of their relatives and loved ones. This is what patients and doctors need to maintain this disease. There is just something inside me that drives me to be the BEST at whatever it is that I do. Brain cancer awareness and education is close to Margarets heart and were delighted that she has agreed to join us for the 2nd Annual Brains Matter Awareness, Auction & Celebration Luncheon on May 17th at the Bellevue Club. 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