Chris Elliott Fund, dba EndBrainCancer Initiative

Survivorship now. Cure in our Lifetime.

aka End Brain Cancer Initiative | Chris Elliott Fund   |   Redmond, WA   |  https://endbraincancer.org/

Mission

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 to Standard of Care for brain cancer patients.

Ruling year info

2008

President & CEO

Ms. Dellann Elliott Mydland

Main address

16150 NE 85th St, #201

Redmond, WA 98052 USA

Show more contact info

Formerly known as

Chris Elliott Fund

EIN

26-2185614

NTEE code info

Alliance/Advocacy Organizations (E01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Survivorship now. Cure in our Lifetime. As of 2021, only 6.8% of brain cancer patients with glioblastoma survive 5-years or longer*, and unfortunately no effective Standard of Care currently exists, although survival rates are improving. Average survival for patients with brain metastases is typically less than 6 months. There is an urgency and a call to action to accelerate the development of better treatments and improve patient outcomes. The daily work and mission of the EndBrainCancer Initiative are focused on effecting change and improving outcomes for brain tumor patients globally through education, access to effective treatments, and fueling research.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Brain Tumor Disease Education, Awareness, and Outreach

The purpose of this program is to educate patients, their caregivers/families, and the general public about the most advanced options in brain tumor treatment. This also includes the importance of seeking treatment at a brain tumor center by medical staff that specialize in treating brain tumor patients. We pride ourselves in being a "disruptive force,” educating patients and their families about treatment options outside and inside the standard of care, and also in ensuring that patients sign all "informed consent” documents to include saving tumor tissue, clinical trials participation, and genomic profiling.

We do this through digital and social media, disease educational online meetings/events, patient roundtables, one-on-one email interactions, Zoom meetings, speaking engagements, live streaming, creation of educational videos/content and articles for large scale distribution through our media partners. In 2020, EBCI reached a potential audience of over 18 million.

Population(s) Served
People with diseases and illnesses
Non-adult children

This program focuses on work with the FDA for approval of new treatment options as well as clinical trial design, NRG Oncology, Clinical Trial Development, participation on numerous patient advocacy boards/councils, review/updates to industry disease educational information, removal of barriers stopping immediate access to advanced treatments, updates to NCCN Physician Guidelines, continuing to grow EBCI’s Medical Advisory Board, utilizing our role as an expert in this field to help create policy that includes the “patient voice”, work with insurance companies to increase coverage of treatment options for patients, work with Medicare to increase reimbursement of FDA approved treatment modalities all in an effort to increase immediate access. Advocates for continued investment by industry into clinical trials/treatment options for this patient population.

Population(s) Served

EBCI directly and personally connects patients, caregivers and families to top brain tumor specialists in the U.S, for 2nd/3rd/4th opinions, surgery, advanced treatment options and to principle investigators, clinical trials and translational medicine. EBCI currently has @ 7,500 touch points per month and opportunities to educate and directly serves @ 900 patients, caregivers, families annually on a one-on-one basis including case management.

Population(s) Served
People with diseases and illnesses
Caregivers
People with diseases and illnesses
Caregivers

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of phone calls/inquiries

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Monthly average number of calls/inquiries/touches to our "Direct Connect" patient services program

Number of groups/individuals benefiting from tools/resources/education materials provided

This metric is no longer tracked.
Totals By Year
Related Program

Brain Tumor Disease Education, Awareness, and Outreach

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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

Financials

Chris Elliott Fund, dba EndBrainCancer Initiative
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Operations

The people, governance practices, and partners that make the organization tick.

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Chris Elliott Fund, dba EndBrainCancer Initiative

Board of directors
as of 01/26/2022
SOURCE: Self-reported by organization
Board chair

Ms. Dellann Elliott Mydland

EndBrainCancer Initiative

Dellann Elliott Mydland

Affiliated with the American Society of Clinical Oncology (ASCO), Society for Neuro-oncologists (SNO), American Association of Neuroscience Nurses, American Association for Cancer Research

Riley Elliott

Business Development Manager at AlphaGraphics Seattle

Claire Tinker, MA, MBA

Principal, TinkerCentric Consulting

Peter Buttler, CPA

Semi-retired professional with 30+ Fortune 100 company experience including Boeing, PWC, General Electric

Organizational demographics

SOURCE: Self-reported; last updated 10/6/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data