This year is all about the reality of running a 501(c)3 non-profit Advocacy organization from my perspective that directly and head-on meets the large unmet need that people, patients, caregivers and their family members will likely experience at the time of diagnosis and at the time or times of a recurrent or multiple recurrent brain tumors/brain cancer –
Like all of you, I NEVER dreamed that my family or I would ever be “touched” by a brain cancer diagnosis. You all know what I’m talking about when I say “it changes you forever”, which is the BLOG post that I will work on next week, so please watch for it.
What I also know, that for me, after going through a 22-month struggle to TRY to save my husband’s life and our children’s father from GBM and despite my VERY BEST efforts, GBM won in taking him away from us/our entire family. What a devasting loss to all, society and especially to our children and to me.
I remember thinking often during our 22-month battle with brain cancer, that if the brain cancer ever wins and takes my husband from us, the cancer will win…….BUT, I also felt and knew, that it would not win forever. I would declare war on it. If you haven’t read “Chris Story” on our website, please take a moment to do so and then join the EndBrainCancer Initiative (EBCI) team and I to fight the hell out of this disease. Read “Chris Story” here: (insert link to Chris Story) and then please give a gift to EBCI to help us fight and end this disease at (insert link to donate on new GiveLively giving site) and/or please consider becoming a Board Member to open up your network to us to increase our resources to fight this disease and to make everlasting change in how this disease is treated for all (insert link to Board Member application).
So, fast forward to 3 weeks before my late husband, Christopher Steward Elliott, passed away from GBM. Chris and I had often spoke about creating a foundation that would help provide IMMEDIATE ACCESS and Disease Education worldwide and directly to patients, caregivers and their families with the goal of ensuring that they were being treated by the “Best of the Best” at a Brain Tumor Center by TRUE brain tumor specialists, starting with the neuro-surgeon, neuro-oncologists, researchers, clinical trial coordinators, neuro/clinical nurses, etc. And, the goal was if the patient/caregiver/family member reached out to us and we realized that they were NOT working with brain cancer specialists or even at a brain tumor center, than we would work directly with them to help them understand why this is KEY and then we would directly and personally connect them to specialists and brain tumor centers, etc.
We have DEF funded key brain cancer research as well in the past, which I will do a BLOG post sometime in future on as I am so very PROUD of how our support went towards amazing discoveries related to brain cancer and the AMAZING IMPACT that our funding contributed to as it relates to how this disease is diagnosed and treated now at actual Brain Tumor Centers of Excellence and by actual specialists working in the brain cancer space.
BUT, as I reflect on 20 years of this work, I am struck by how unfair it is to the person/family/company, the entrepenurer, etc. that is left behind and truly “sees” the “change that needs to be made to make lasting impact” in how patients are “diagnosed, identified for advanced treatments/clinical trials and even Standard of Care” SOC.
You see, it was NEVER an option for me to allow my husband to pass away from GBM and then to NOT do anything about it. Brain Cancer WAS not ever going to WIN and it still isn’t! I am damm proud of that. This disease may have underestimated me and my anger that still exhists today at this disease. Not only did I loose my husband to this disease but the Chris Elliott Fund/End Brain Cancer Initaitive and I have lost countless patients, adults and children, to this disease and we’ve spent MANY hours with these patients and the loved one of these patients listening to them, helping them learn about/understand the need to work with specialists and researchers and the need for continued research in this disease as well as the need for IMMEDIATE ACCESS to advanced brain cancer treatments/clinical trials, devices, diagnostics, etc. that make science sense, now that we know that GBM is not one disease but is a disease that needs to be treated with a personalized approach as science reflects.
As much as I am proud of the incredible journey and work that the Chris Elliott Fund/End Brain Cancer Initiative (EBCI) and I have been on to make lasting change within this disease, I had NO IDEA how expensive it would be. I had no idea that the large amount of $’s needed to run free services and programs would be so huge and incredible and I had no idea how hard it would be to bring in unrestricted funding that could actually be used for the organizations increased capacity and sustainability. I had no idea that I would be called upon to provide over $3M of my personal resources over the last 20 years just to keep the organization and my late husband’s and my dream alive to strategically help people diagnosed with GBM and their families, provide loved ones/families and patients an organization and a person that they could voice their innermost fears to and to get these patients into specialists and advanced treatments/clinical trials asap. I had no idea!
Every day, I sigh a GIANT sigh of relief that we are still in business and I know in my heard of hearts that it is because I personally had the deep pockets and resources to stop us from closing our doors MULTIPLE TIMES. I personally would have been devastated to have to close the doors, although, I’ve had to close our doors multiple times due to lack of funding.
What I fail to understand, where are the people and companies that can provide large funding $’s that can be used for capacity, sustainability, meaningful change in policy and Standard of Care as well as how clinical trials are developed. Where are the LARGE donors who can and should have donated $500,000 – $10M annually to ensure LARGE LASTING CHANGE in how this disease is treated for ALL patients and future patients who are diagnosed with GBM.
I have been frustrated for 20 years about how hard it is to fund “good work” that helps people and updates in a positive way, research which translates to updated Standard of Care (SOC) for all brain tumor/brain cancer patients. In our experience, industry funds via disease education grants and sponsorship of events/meetings/initiatives/campaigns, etc. but in small amounts that simply fund specifically for what the item is and not in large $’s that could actually make lasting positive change. Therefore, again, where are the individual donors who can fund this work properly? This is the day-to-day frustration that I live with running a 501(c)3 non-profit and I don’t think it is right. It is crippling.
Why isn’t someone paying for our office space, the “End Brain Cancer Initiative’s Support and Service Center? Why have I not been able to hire an Executive Director/CEO to replace me, why haven’t I been able to hire a Development Director to bring in most of the funding that we need to offer our free services and programs and to pay for additional very needed staff as well as disease education national press releases, ads in medial journals, TV/Media, etc. Why? The answer is because the large donors so far have not partnered with our mission, which is beyond disrespectful, disappointing and sadly, has not allowed us to scall BIG. Just think, if EBCI could scale big, how much change we would make which would lead to many more survivors, increased survivorship, Quality of Life and increased research which leads to increase diagnostics, treatment options, data………….this is where my daily sadness and frustrations are. If anyone could make lasting change, it is the EBCI and I because this is what we are generously focused on rather than becoming the largest brain tumor advocacy organization like some of our counterparts. We truly are an advocacy organization with or focus on the patient and not on our bottomline, although, a huge increase in our bottom line would DIRECTLY and POSIVITELY impact this patient population. We created the Chris Elliott Fund that you now know as the EndBrainCancer Initativie because we couldn’t find anyone and certainly an advocacy organization that would directly help us contact specialists and directly help us in receiving advanced treatments/clinical trials. Directly is different than the practice of using a software platform to help qualify one for clinical trials like many advocacy groups utilize. We have found and KNOW that the person and their family that is diagnosed with a brain tumor/brain cancer actually need to lean on a real person, be able to reach out to with any of their concerns, need to talk and spend hours communicating with a live person and ultimately, need someone like or organization to handle getting their medical records into the hands of specialists and in putting the patient/caregiver directly in touch with the specialsits, researcher, etc. via text, phone, email, app, etc. It costs a lot to do this and this is why, in the brain cancer space, there are very few people and/or advocacy organizations funding this vital work– it takes a lot of money and resources to support this very important necessary need.
If you are a large donor/investor and you are reading this, please contact me directly at [email protected] to get very involved with this goal and understanding that you have the ability to partner with EBCI and I to change the way this disease is diagnosed and treated for ALL and for FOREVER. It is long past about time to stop this disease in its tracks.
Blessings, Dellann Elliott Mydland, Chair, President & CEO, www.EndBrainCancer.org. 425-785-8489.