Today, while going through old patient and caregiver files dating all the way back to 2002, I honestly had a moment, actually more than a moment – have pretty much taken the entire day, to reflect. “Reflecting” is not something that I get a chance to do often as the workload that comes from starting a 501 (c)3 non-profit Advocacy Organization is heavy, listing to patients and caregivers needs is vital and very difficult all at the same time and having the responsibility of raising the funds necessary to provide our disease education, awareness, outreach efforts, programs, campaigns/initiatives, mission, services and IMPACT, is beyond EXHAUSTING.
Usually, I am unable to spend even a second reflecting on the powerful work and lasting impact that the organization my late husband, Chris Elliott, and I started in 2002, because the need is so great BUT as the Chris Elliott Fund, now known as the End Brain Cancer Initiative (EBCI) prepares to celebrate 20 years of passion, hard work, so many patient and caregiver interactions and stories, the amazing opportunities given and taken to make lasting positive impact to the lives of brain tumor patients and their caregivers and families and today, a strong sense of gratitude for this amazing opportunity that the last 20 years has granted me. I am beyond grateful.
As EBCI celebrates 20 years of service, I am allowing myself to reflect even more. We recently combined two EBCI locations into one location as well as reviewed our document retention policy. I’m a bit of a freak when it comes to getting rid of our organizations information, patient information, records, etc. and in fact, I insist that my eyes “see all” before we shred or recycle – it’s just me. So, over the last many months, I’ve been going through A LOT of old materials, files, including old patient and caregiver/family files from those we have provided our “Direct Connect/Patient Navigation” Services to in the past. Wow! I am kind of still surprised at what happened to me during this process.
I could almost remember each and every patient case and there are 1,000’s! As I would read the patient’s formal “InTake Form”, email inquiry for help, notes from their call, our research, call and email notes, almost every patient face and/or their loved one/caregiver or family member face came forward. I finally “got it” and understood the AMAZING UNMET NEED our organization has been providing to these patients and their loved ones for the last 20 years.
I’m shaking head and have a happy lump in my throat because this is EXACTLY WHY Chris and I created this organization so many years ago. During Chris’ diagnosis and treatment, we lived the fact that most patients that are diagnosed with a high grade glioma and Glioblastoma (GBM) then and even today, are not referred to a specialist or even a brain tumor center and are not offered anything outside of Standard of Care, even though, all healthcare institutions/hospitals, healthcare providers and researchers know that Standard of Care for this disease does NOT create survivors and and that this disease actually needs to be treated under a “peraonalized medicine” protocol.
The tears and lump in my throught are from the fact that the Chris Elliott Fund DBA End Brain Cancer Initiative has actually changed this experience for many just before diagnosis and exepcially after diagnosis and before the patient has a recurrence/tumor growth and/or a new tumor. Over the last 20 years, the Standard of Care for this patient population HAS actually changed and has become more aggressive BUT it has a long way to go in changing Standard of Care, which is physician practice.
I am proud of ALL of the patients, caregiver and families that this organization that Chris and I created with the desire to improve Standard of Care and research has done just that. I say this while also very passionately feeling that there is so much more to be done and so many things that we didn’t get a chance to do yet to change for patients related to the way this disease is treated and the policy changes to be made to create IMMEDIATE ACCESS FOR ALL to have/get advanced treatments and clinical trials. I do regret that we have not been funded enough to, after 20 years of Advocacy, been able to create Standard of Care that allows for IMMEDIATE ACCESS for ALL to a personalized approach to advanced treatments and clinical trials and of course, to specialists who can provide the access to advanced treatments and clinical trials that make science sense for EACH individual patient diagnosed with GBM so that this disease is indeed treated with a personalized medicine approach.
As I take a step back and let it all sink in, I cannot believe it has been 20 years since Chris and I said “the medical system is broken for these patients and what if we could fill the disease education and access gap that is missing for all patients diagnosed with a brain tumor/brain cancer”. It was at that moment that we decided to create a foundation that would meet this enormous GAP. Please help us meet this need by donating today at: (insert link to give via website, our physical mailing address as well as the QRCode that Susan has recently created to give in honor of our 2 years).
On that note, I am already working on my next BLOG post which will be all about “that moment when we decided to create a foundation to help all future people who will be dianogsed with a brain tumor AND the exact moment I knew that I had declared war on brain cancer.
Please also consider signing up for our eNews to stay informed on our work and how you can lend your voice and be part of policy change and be active in changing HOW this disease is treated by ALL physicians, including those practicing in their local hospitals (include link to sing up AND the QRCode Susan has made for this purpose).
As always, please tell us your story and let us know how we can work together to End Brain Cancer.