For the last 15 YEARS we’ve had the opportunity to make an impact on the lives of Brain Cancer Patients and their families.
As I’m writing today, I can’t help but reflect on one particular day. Not the day that my late husband, Chris Elliott, and I started our brain tumor journey but the day that Chris and I decided to “DO SOMETHING ABOUT THIS DISEASE”. May 18, 2002.
This is the day that the Chris Elliott Fund, now known as the EndBrainCancer Initiative, www.EndBrainCancer.org, was born. There are still so many mixed emotions that memories of this day brings and I always get a lump in my throat when I think about it. I still feel the absolute fear and terror of that day as this is also the same day that our neuro-surgeon, Dr. Peter Black at Dana-Farber told us, “he would not be doing a surgery today because Chris’ brain cancer had spread to his brain stem as well as to his spine”. I knew enough at that time about the disease to know that my late husband’s fight against this disease was going to come to an end soon. I was crushed and attempted to be strong for Chris, but honestly, I just cried right along with him and his neuro-onc, Dr. Elizabeth Maher. As I write this, the tears still come…..there are truly moments in your life that define you and for me, this was and remains one of those moments.
I remember later in the afternoon Chris and I talking and working on creating his “Top 10 Bucket List”. This is the list of things he wanted to do or accomplish before he died. We were told that potentially, he had about 2 more months to live so he certinaly wanted to get moving on that list! One of the things he listed was “TO DO SOMETHING ABOUT THIS Disease”. We created the Chris Elliott Fund that very afternoon. Fast forward to now, 2017. With May 18th, 2017 upon us next week, I simply cannot believe it has been almost 15 years since Chris and I created the Foundation. The goal was always to help brain tumor patients and their families change “their story” so that it was different than ours and so that they had IMMEDIATE ACCESS to not only top brain tumor specialists, neuro-surgeons, neuro-oncs and Principal Investigators, but also IMMEDIATE ACCESS to advanced treatments, studies and clinical trials. We have not waivered on these key goals and every day when meeting with or talking to brain tumor patients and their caregivers, I immediately go back to May 18, 2002. I still very much desire to see brain tumor patients and their loved ones end up with a story about their quality of life and of long-term survivorship.
I am beyond proud of the work the EndBrainCancer Initiative/Chris Elliott Fund has accomplished in honor of my late husband, Chris Elliott, Our day-to-day /one-on-one work with this patient population and the work we have done to bring new treatment options into the mainstream has been vital. However, I would be lying if I didn’t say we that we have so much more work to do. The day-to-day work and programs always continue but as this disease continues to grow, we find ourselves continually turning away over 50% of those reaching out to us for the support we offer in the way of education and connecting them directly to top specialists, advanced treatments, and clinical trials. The funds we receive help us not only to educate but to work towards improvement in Quality of Life, Longer-Term Survivorship, in addition to fueling research. The EndBrainCancer Initiative and I believe that we could offer this patient population more personalized treatment options if we were able to respond to more of those that ask for our help. We want change Policy and Standard of Care to automatically include two things at the time of a primary or metastasized brain tumor:
- Automatically include in the treatment discussion, a “Talk Track” regarding Clinical Trial options
- Automatically include genomic/DNA/molecular/MGMT Status and Protein Testing and use those results to inform on Treatment Options
It is the above two items that will become the EndBrainCancer Inititiative’s and Chris Elliott’s legacy making a lasting impact in healthcare delivery. I know that if Chris were here today, we wouldn’t have had the chance to make such a significant different in these lives. Each time the EndBrainCancer Initiative and I are able to help a brain tumor patient, caregiver and/or family member, I see Chris’ face and I still remember our very difficult and personal journey with this disease. Today, I take comfort and am proud to say that we try to treat each patient that we work with as if they were our loved and we are honored that they allow us to walk beside them.
On our 15th Anniversary, I celebrate all those brain tumor patients, caregivers and families that we have helped over the years. On May 18th, I will be giving a silent toast to Chris and saying “Thank You” for helping me create the movement towards immediate access to Top Specialists, Tumor Tissue Saving and Testing not to mention access to Clinical Trials and Studies. He knows that I meant it when I replied “OK” to his request to “Do Something About this Disease”. It might have been just a simple “OK” but I was already thinking about going something major because my husband’s death is NOT going to be for nothing. I remember that 15 years ago, I declared “Revenge” on brain cancer, so “brain cancer” you need to watch out because the EndBrainCancer Initiative and I are coming for you.
Please join us in this Movement by pledging your support via a gift here or, if you can, join us in person on May 18th to meet Actress, Author, & Survivor, Fran Drescher, at our 6th Annual “Brains Matter Awareness, Fundraising and Celebration Luncheon” located at the Bellevue Club. Fran Drescher has her own Cancer Story to share about Early Detection, Prevention and Policy Change. Only 30 seats are left. Preregistration required. Click here for tickets.
In celebration of EVERY brain tumor patient.
XO, Dellann Elliott Mydland,
Co-Founder & President, EndBrainCancer Initiative
(formerly the Chris Elliott Fund).