Chris Elliott Fund, dba EndBrainCancer Initiative

The EndBrainCancer Initiative is dedicated to closing the gap to advanced treatment and clinical trial participation, and to providing HOPE to brain tumor patients and their families nationally. Our goal is to extend lives, increase survivorship, and improve quality of life for patients nationally by quickly connecting patients to our network of regional experts in brain tumor treatment and research across the U.S. so they have access to the best and most advanced treatment options available.

With the support of our Medical Advisory Board, we inform and support personalized medicine approaches tailored to each brain tumor case. We assist patients in developing their own Patient Empowerment Plan to guide them through the process, and actively work with patients and their caregivers/families in helping them navigate through treatment. We actively look for clinical trials that might be appropriate for them, and where they express interest, connect them with the Principal Investigator at a regional brain cancer center.

Much of our work is dedicated to disease education for patients and their families as well as the general public. We believe that education is essential for patient empowerment and that educated patients are potentially more open to exploring emerging and advanced treatment options for their disease including clinical trials. Our unique patient materials arm patients and their caregivers/families with the questions and background necessary to have informed discussions with their medical team. We provide hard copies FREE OF CHARGE to patients and their caregivers/families. We also believe that it's critical for members of the general public be aware of advances in science including therapies targeted at specific genetic biomarkers within a patient's tumor, immunotherapies, vaccines, and new combinations of existing therapies. This is so that if they or someone they know is affected by brain cancer or another form of cancer, they are prepared to insist on more than one opinion and to be treated by a medical team that's expert in the field.

Finally, we are striving to effect change so that brain cancer becomes a serious, but treatable, disease for most patients. We do this through advocacy work to make promising new therapies more generally available, which includes work on insurance coding and reimbursement, “compassionate use" of existing therapies that could potentially be of benefit, and changes to NCCN clinical trial guidelines to accelerate the introduction of new and promising therapies. We are also increasingly being asked to provide the “patient voice" to clinical trial design. Our ultimate goal is to change the Standard of Care so that these therapies are made generally available to all cancer patients who could potentially benefit.

EBCI's strategies and programs are designed to meet the immediate needs of brain cancer patients and their families for access to life-extending treatments including clinical trials as well as make a significant contribution to the long-term solution which is therapies which are much more effective, less toxic, better tolerated, less invasive, and much more generally available than what is offered by current Standard of Care. For those patients we directly assist in our day-to-day work, our goal is to extend lives, improve outcomes and enhance their Quality of Life. Our “Direct Connect" program is unique in that we have one-on-one conversations with patients and their families, who are often looking for a friendly voice as much as access to specialists and advanced treatment.

Our short-term and long-term strategies are supported by our three programs:
• “Direct Connect" Patient Services Program: EBCI connects patients to top specialists for 2nd/3rd/4th opinions and to principal investigators, advanced treatments, clinical trials and translational medicine. EBCI currently receives 7500 monthly inquiries and directly serves and helps educate 900 patients, caregivers and families annually on a one-on-one basis. Our goal is to empower patients to be their informed advocates for their own healthcare.

• Brain Tumor Disease Education, Awareness, and Outreach Program: Education-Awareness-Outreach through creation of educational materials for patients as well as the medical community and through the use of social media online support groups and through our media partners. In 2017, EBCI was given 4,670,928 opportunities to educate patients, caregivers and families as well as the general public. Our goal is to create a better-informed public and brain tumor community as well as keep our followers abreast of the latest in medical research and emerging treatments.

• Brain Tumor Patient Advocacy and Access: EBCI's Advocacy Program focuses on work with the FDA for approval of new treatment options and on work at a Federal level for reimbursement, working with insurance companies for patient coverage and participating in clinical trial development. Our goal is to accelerate the process in making new treatments available as well as increasing patient access to new treatments.

EBCI also contributes to clinical trial design and is currently the “patient voice" for several of these trials as well as ongoing advocacy work in life sciences, biotech pharma, biomed, CROs, and medical devices industries on behalf of brain tumor patients.

Our “Direct Connect" Patient Services Program has been in effect for nearly 20 years, assisting patients and their families navigate throughout their brain cancer journey, as well as connecting them to advanced treatment and clinical trials. We have a proven model which has been demonstrated to be effective, both in creating HOPE and also for connecting patients and their families to advanced treatments and clinical trials.

We are effective in our work because of carefully nurtured relationships with top brain tumor specialists and their staffs who represent top brain tumor centers across the country. We personally vet every one of these specialists via a personal visit, with many being members of our Medical Advisory Board.

Our Industry partnerships – life sciences, biotech pharma, biomed, CROs, and medical devices, etc. – add another dimension, both for keeping our staff abreast of emerging therapies, and also increasing patient access through “compassionate use" programs.

Our education/awareness/outreach efforts are supported through continued expansion of our Education & Media Partnerships to leverage our disease education, awareness, and outreach efforts which increases EBCI's opportunities for disease education from 1.3 million to 4.3 million annually. This extends our reach exponentially and also helps increase visibility related to new treatment options and also public awareness related to EBCI's "Direct Connect" and Education, Awareness, and Outreach Programs.

In 2017, EBCI achieved "expert status" on Social Media as the "go to" source for disease education & awareness related to brain cancer treatments and specialists. As confirmed through Klout, EBCI is currently in the top 1% in terms of social media influence for the topics of Advocacy, Brain Tumors, Cancer, Clinical Trials, Neurology, Neuroscience, and Oncology.

As of 2021, our Founder and President is extremely active as the “patient voice" in several situations:
• Co-author of the article "The Importance of Shared Decision-Making for Patients with Glioblastoma" published in the Patient Preference and Adherence journal
• Fred Hutchinson Center for Outcomes Research (HICOR) “Outcomes of Care" Working Group to determine the best time to introduce Palliative Care to terminally ill patients and when/how best to train physicians to use the new health insurance/reimbursement code for this practice/services.
• Patient Advocate for the AGILE Adaptive GBM Clinical Trial

She is also a regular Op Ed contributor to CURE Media Group and participates in brain cancer educational videos.

Since our founding in 2002, the EndBrainCancer Initiative has been dedicated to changing how brain cancer is treated and offering HOPE to brain cancer patients and their families while advancing science.
• 2002-2007: Provided seed research money that led to the discovery that Glioblastoma Multiforme (GBM) is not one disease but two subclasses of disease (now there are at least 16 different subclasses of disease). Funded research that identified and prioritized the genes that cause GBM, which inspired a multi-center effort across the U.S. to determine the alterations in all human cancers.
• 2008: Turned focus to supporting patients and their families facing a brain tumor diagnosis. Developed the integrative patient support program for a local Seattle cancer center and funded the social worker providing these services.
• 2011: Dellann Elliott Mydland, EBCI Founder & President, testified before the Neurological Devices Panel of the Medical Devices Advisory Committee to the FDA calling on the panel to “give brain cancer patients more treatment options and more hope for an incurable disease" and approve a new brain tumor-blasting device, then known as the NovoTTF, for recurrent GBM patients. The medical device, now Optune, has become a standard treatment option for new and recurrent GBM patients.
• 2011: Took on the patient support services formerly provided by the National Brain Tumor Society which resulted in a fourfold increase in demand for our services from patients and their families across the U.S.
• 2015: Launched the EndBrainCancer Initiative, a nation-wide collaborative of industry leaders, research scientists and leading physicians to change the clinical trial process and focus on immunotherapy, vaccines, Phase 0 studies and personalized medicine.
• In 2015, Founder and President Dellann Elliott Mydland was nominated for Cure Magazine's GBM Heroes Award. Dellann has been honored by Harvard University as a National Glioblastoma Patient Advocate and by the National Brain Tumor Society as the “National Voice of Brain Tumor Patients."
• 2016: Ramped up our Education/Awareness/Outreach through our media partners, and through ramping up our social media presence. In 2017, we were given 4,670,928 opportunities to educate patients, caregivers and families as well as the general public.
• 2017: Were invited to participate in a number of clinical trials, lending the “patient voice" to ensure that patient needs are met, including a Wake Forest University SPORE program.
• 2020: EBCI pivoted much of its programming to an online forum due to COVID-19. This has actually expanded our reach due to the infinite borders of the online world.
• 2022: EBCI will be celebrating its 20th Anniversary