Chris Elliott Fund

Bringing HOPE to the lives of brain tumor patients & their families

December 9, 2014
by Dellann Elliott Mydland
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It’s OK to Feel Sadness & Anger for your loved one that has passed away without receiving advanced brain cancer/tumor treatment, but…….

Please turn your anger and sadness into something good as a way to honor your loved one.  I might be able to help you with that. At the Chris Elliott Fund, we talk “LIVE” all the time as well as via email/social media & online support groups with many caregivers, loved ones and the families of brain cancer patients that have passed away.  Something I have noticed is that often times, there is anger and sadness expressed when a new treatment or a possible new treatment/clinical trial becomes available or anger arises when the loved one is not able to participate in a clinical trial for  various  reasons.  Most  of the anger and sadness stems from the following:

  • Receiving “Compassionate Use” of the treatment under study is so hard to get, and
  • The parameters to get into a Clinical Trial are very tight (this is what Al Musella, The Musella Foundation” is working on.) The idea would be to lesson these parameters and to make the actual time spent in the clinical trial shorter.

Brain Tumor patients and their  loved ones often feel anger and sadness that their loved one did not get the opportunity to have a new and/or promising treatment.  I understand this and even today, 12.5 years after my  late husband, Chris Elliott, has passed away from this disease, I often think that although I am beyond delighted as a brain cancer patient advocate that new and promising therapies are being developed and even though I often have something to do with “IMMEDIATE ACCESS” of  these treatments for brain cancer patinets, I still think about how great it would have been if Chris had had access to these treatments too.

Having said this, I do want to share that although there is a piece of me that is saddened that Chris did not live long enough to see these new treatment options, I am also beyond THRILLED when I learn of new possible treatment options and am thrilled because then, I have something new to talk to brain cancer patients about and to try to get them into this treatment.  This is what I do to honor my late husband’s life.

While writing this BLOG post, I  realized that it  may be helpful to share that the role of CEF’s Health Information Concierge (HIC)/Patient Advocate (PA) is to help those seeking advanced treatment and to help them get into the treatment fast.  The role and goal of the HIC and the mission of the CEF is to shorten the GAP it takes from a patient’s brain cancer diagnosis and the time it takes for the patient to learn about and get into advanced treatment/clinical trial.  CEF feels that if we can do this, we can aid the patient who is seeking advanced treatment to fight their disease because let’s face it, present standard protocol to treat GBM is not creating a healthy amount of survivors.  All of us want to change this – we want these patients to have IMMEDIATE ACCESS to advanced treatment that may save their life.

The CEF feels that if we can have patients and their families contact us immediately at diagnosis or better even yet, have the general public know that they need to contact us at the time of diagnosis and BEFORE SURGERY, we feel that we can cause a “shift” in and close the “GAP” between a brain cancer diagnosis and the time  it takes to learn about advanced treatment and the time it takes  to get into a clinical trial.  If we can  do this, we believe we can give the patient and their loved ones more “HOPE” in fighting this disease and from a research standpoint, we feel that we can “feed” the research with more tumor tissue as well as more patients. When we are successful in this endeavor, there is a change then that it will become easier to get into clinical trials and the length of the trials themselves will be shortened.

I  invite you to learn more and join us in this effort at www.ChrisElliottFund.org.  I also invite you to learn more about our mission and day-to-day work by checking out the job description for our Health Information Concierges.  In early 2015, CEF is expanding our free brain cancer patient support services and will be hiring another Health Information Concierge, (link). Please consider spreading the word and joining forces to help those families and loved ones of brain cancer patients know and understand that we “hear” you and understand your anger and sadness that your loved one did not have IMMEDIATE ACCESS to advanced treatments.  We know the system is broken.  I’d like  your help fixing it.  Info@ChrisElliottFund.org.  We CAN DO THIS Together!

December 1, 2014
by Dellann Elliott Mydland
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Brain Cancer & Cell Phones?

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 years ago while in DC., I attended a conference on this very subject.  Although, I love my cell phone, I came away from  this conference feeling like a “Best Practices” philosophy is warrented when using cell phones, such as always either use it on speaker, use earbuds, alternate sides of the face/ears that one uses their cell phone on, do not sleep with the cell phone anywhere near your head/body, etc.  So, I’ve always had a feeling of wonderment and suspect when it comes to the use of Cell Phones and if they may have something to do with brain cancer.  I am often also asked this question and can only share what I am sharing here until now……

Over the weekend, I read several reports on this subject related to a new study on this topic.  The link for one of these reports is here: The Risk of Brain Tumors from Cell and Cordless Phones.  Again, I am not a doctor, scientist, researcher, etc. but I am someone who will follow this research going forward and I will most certainly not be shy about speaking to the general public and especially, parents of pediatric brain tumor patients, about this information and the “sensibility” to monitor their child’s use of cell phones given what we now think we know about their possibility of causing brain cancer.

Blessings,

Dellann Elliott Mydland, Founder & President

The Chris Elliott Fund

November 25, 2014
by Dellann Elliott Mydland
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HOPE for Brain Cancer Patients

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 San Diego  and here in Seattle.  Dr. Santosh Kesari first introduced me to  the Chairman/President/CEO and the COO of Nativis, the company that developed the technology for this  device, John & Lisa Butters,  3 years  ago.  It has been REALLY exciting to see this technology and  this device  come  to “light” with the prototype that will be used  to  treat GBM in clinical trials. I am very  pleased and  proud to call Lisa and  John my friends but more importantly, I am so thankful to them for  their vision, persistence in bringing their dream into the lives of brain cancer patients and  am equally thankful to their stakeholders for continuing  to  fund this technology and this device.  Please go to these two links (the 2nd link is related  to  the  canine study  and results that lead to clinical trial of the Nativis Voyager System in humans) to  learn more about one of the things/new treatment I am so excited about for the brain cancer community:

http://clinicaltrials.gov/ct2/show/NCT02296580?term=NCT02296580&rank=1

http://youtu.be/zX6eEWuSEQI

AND, On Saturday, 11/15,while in Miami at the annual Society of Neuro-oncology meeting (SNO), where about 2000 national and worldwide researchers, scientists,  neuro-oncologists, neuro-surgeons, investors, advocacy groups, etc. gather once a year to listen to presentations related to  the outcomes of  and/or  clinical trials in the pipeline.   Truly, when one is fighting this disease, you often feel very alone and sometimes  you wonder “WHY ISN’T THERE BEING SOMETHING DONE ABOUT THIS DISEASE?”.  If you  were to  ever have the opportunity to attend this meeting, you would be encouraged and see firsthand that truly,  there are many around the world truly dedicated to fighting  brain cancer AND there is very encouraging news coming out of the research community.

I don’t know if I  can adequately convey how I felt when Dr. Stupp was presenting a “New  Standard of Care” for GBM patients and was speaking about a “Paradigm Shift” in treating his disease based on the outcomes of the EF-14 clinical trial, a multi-center  trial  of NovoTTF together with  Temodar compared to Temodar along in patients with newly treated diagnosed GBM.  Go to this link to read more about the awesome  outcomes of this year’s  SNO conference provided by our friend and partner, The Musella Foundation and Al  Musella: Highlights From the Society Of Neuro-Oncology 2014 Conference  The last section talks about this “Paradigm Shift”.  After you read it, you will understand more about the “Pinch Me Moment” I am trying to express. I kind of felt that I was living in an “Unbelievable  Moment” and I had a lump in my throat as I  realized what  this meant to brain cancer  patients, their  families and  IMMEDIATE ACCESS to this treatment.  As some of you know,  I’ve worked  closely for years with the company, Novocure, who produces and markets  the device known as the Novo-TTF, newly named “Optune” and have been involved in bringing this device to market for several  years even before I testified to the FDA Medical  Devices Committee on why this device and this treatment option must  be approved  for  brain cancer  patients.  I kind of had a moment where I felt like God and Chris were looking  down on this announcement, smiling and shaking hands.  It’s as if they  were almost  saying “Well  Done”.

I am so proud to be fighting every day for IMMEDIATE ACCESS for  the brain cancer patient and their  family.  Thank you for allowing me to  fight for you!  We just got access to more treatment options and therefore,  more HOPE to a CURE!

During this Thanksgiving Time,  I am truly feeling blessed.  Happy Thanksgiving to you and your family from  the Chris Elliott Fund and I.

 

Blessings,

Dellann Elliott Mydland, Founder & President

November 9, 2014
by Dellann Elliott Mydland
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Brittany Maynard – A Loss

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 results of clinical trials with 90% of all presentations concentrating on Glioblastoma/GBM, which is the type of tumor Brittany had. Both Al and I will be at this meeting learning about new treatments for brain cancer so that we can share these treatments with those that contact us. We will be putting patients in direct contact with the specialists running these clinical trials and advanced treatments. I truly wish we could have had the opportunity to do this for Brittany.

As a 501 (c)3 non-profit, the Chris Elliott Fund provides free brain tumor patient & caregiver support services and educational materials.   We would  have  been honored to advocate on behalf  of Brittany and her family. We are confident that she had more options than her family were likely lead to believe were available. Rest in peace Brittany and to Brittany’s family; please consider working with us at the Chris Elliott Fund to keep Brittany’s legacy alive and to further spread the message that the world needs more education and awareness related to this disease.

May is National Brain Tumor Awareness Month.  The Chris Elliott Fund will be dedicating May 2015 to Education and Awareness Related to Brain Cancer Treatment Options in honor of Brittany Maynard.  To learn more about and keep current with the Chris Elliott Fund, advanced brain tumor treatment options,  advocacy work being done to bring more treatment options and quality of life to patients like Brittany, please sign up for our periodic email newsBLAST and learn more about our free services at www.ChrisElliottFund.org,  www.EndBrainCancer.com or contact us directly at 800-574-5703 or at Info@ChrisElliottFund.org.  Blessings,

Dellann Elliott Mydland, Founder & President

Chris Elliott Fund.

 

July 17, 2014
by ClaireT
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Chris Elliott Fund Featured on Clear Channel Media’s Seattle Radio Stations

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.

The program closed with a reminder that the 13th Annual Chris Elliott Fund Celebrity Golf Tournament is just 3 weeks away on Monday, August 4th at Bear Creek Golf Club in Woodinville WA and how important the event is in honoring the organization’s co-founder Christopher S. Elliott, for increasing public education and awareness, and for funding vital services that are delivered FREE OF CHARGE to patients and their families.