HAPPY NEW YEAR EVERYONE!
It has been a privilege for the EndBrainCancer Initiative (EBCI) team and me to be of service to you in 2017 and I am SO excited for 2018! All of us at the EndBrainCancer Initiative (EBCI) are focused in 2018 on improving patient outcomes and encouraging and increasing IMPACT in 2018 and this is how we will accomplish these goals:
- Continue to put into place more “Corporate Partners” within biotech, pharma, device and diagnostic companies, which allows EBCI to educate the general public as well as the brain tumor community on new research, new clinical trials/studies and advanced treatments and to incorporate this information into our Education/Awareness/Outreach program, our daily discussions with patients/caregivers and families as well as incorporate this information into our “Direct Connect” program. In 2018, we hope to be able to hire a full time seasoned Executive Director so that I can get out into the field to identify and then to solidify 8 more Corporate Partner contracts as well spend more time in DC advocating for FDA approval of new treatments for brain cancer as well as work on advocacy related to the proper coding and reimbursement/coverage of these new treatments in order to help create IMMEDIATE ACCESS for the brain tumor community to these treatment options. This includes advocacy work related to updating the NCCN Guidelines to include genomic testing, MGMT testing, etc. and to make these tests part of Standard of Care as well as using the information revealed in these tests to guide the treatment. The goal is to move Standard of Care for brain cancer patients to a personalized approach using the science that we now have but need all to have access to. We hope that 2018 will allow us to allow more brain tumor patients to know and insist on the saving of their tumor tissue and testing of that tissue to inform their treatment options
- Continue collaboration and increase our participation in clinical trial development to ensuring the “patient voice” is heard and implemented into the design of clinical trials we initiate and collaborate on. Identify and Develop new, potential research projects/trials/studies and expand our ability to connect the research project to the institution, researchers & funders necessary to “launch” the project. GOAL: improve the clinical trial process, increase the number of clinical trials and participation for patients as well as to improve triaging patients into trials or into separate arms of the trial. Clinical Trial Reform is a focus item for EBCI.
- Increase our Education/Awareness/Outreach Program to allow us to accept collaborative offers with new biotech, pharma, device and diagnostic companies to develop their patient education materials and messaging to the brain tumor community for greater relatability and impact as well as to allow us to increase our funding in order to provide more services. We hope to be able to hire a part-time Communications Specialists to help us increase our Education/Awareness/Outreach Program worldwide in order to bring more resources, engagement and empowerment to the brain tumor community.
- Expand our “Direct Connect” Program and the ability to serve more brain tumor patients, caregivers and their families, help to meet the large unmet need that exists as we turn away way too many people from our programs due to lack of resources. We can do this through hiring a full time Program Manager as well as two more full time “Patient Liaison/Patient Navigators”.
- Put into place 4 additional partnerships with Philanthropic Advisory and Investment Advisory firms so that EBCI significantly increases the amount of direct public support from major donors. Additionally, this will encourage major donors to recommend EBCI as the recipient of donor-advised grants in support of our Operations and Programs.
- Build out and leverage our partnerships with Cure Media Group, the Oncology Specialty Group, and other industry media, including publication of additional op ed pieces and articles to highlight the work that EBCI is doing in changing clinical guidelines and practice in treating brain tumors as well as bring more resources, engagement and empowerment to the brain tumor community..
- Sign a new lease for our Center/Office space so that our work can continue. Our current lease will end in June, therefore, we are hopeful our rent won’t be raised out of our reach and if it does, that means moving our Center/Office space in mid-2018. We will work on raising $72,000 this year to cover our lease/rent of our Center/Office and hope to raise this amount via our upcoming Annual Appeal which will begin soon and go through the end of Feb.
We ask that you partner with us to accomplish the above 2018 goals as it is our wish for the New Year that all patients diagnosed with a brain tumor, brain cancer or metastasized disease to the brain allows us to help educate them about their options they need to know prior to surgery as well as help to connect them to specialists as well as to connect them to clinical trials that are the right clinical trial for them based on their genomics, MGMT status, etc. It is an honor to serve you!
Dellann Elliott Mydland, Founder & President