The End Brain Cancer Initiative (EBCI) APP is a free mobile application (Apple and Android) intended for brain cancer education, including primary central nervous system lymphoma (PCNSL) for patients and their families that allows users to learn about symptoms for various brain cancers/metastasized disease/tumors to the brain, download informational videos and literature on the latest treatments and clinical trials and locate a brain cancer specialist doing clinical trials.This disease education tool will be searchable and downloadable at the Apple Store and Google Play Store with the “official” wide launch occurring on Tuesday, November 17, 2022. To learn more, go to: Https://endbraincancer.org/ebci-app/
EBCI encourages everyone to pay attention to symptoms like issues with balance, headaches, memory problems, stroke like symptoms, personality changes, eye issues, etc. Now with EBCI’s new app, patients, caregivers, families, healthcare providers and the general public will be able to access information to disease education, diagnostic information, advanced treatments, clinical trials, specialists/providers, comprehensive genomic testing, standard of care (second, third, fourth opinions), knowledge/awareness in rural communities, participation in patient/caregiver surveys and advocacy opportunities-- all through a handheld mobile device.
In 2021, EBCI (www.endbraincancer.org) reached a total of more than 18,000,000 opportunities for brain education/awareness and outreach through outbound education and communications, using channels like Facebook, Twitter, Instagram, digital media/eNews, disease education articles, speaking engagements, appearances, online disease education meetings/events, etc. and now the new mobile app will allow EBCI to reach even more brain tumor patients and their families, brain tumor support groups, online forums and the general public in an effort to increase patient access.
Dellann Elliott Mydland, EBCI’s President & CEO, explains, “In honor of our 20th year of Advancing Patient Access, we are launching a disease education mobile application tool for patients and their families diagnosed with brain cancer. In most cases, a decision as to surgery and treatment needs to be made within 72 hours of diagnosis of a brain tumor, leaving many patients and their families scrambling to decide urgently where to seek help. This tool will help them find the latest information on clinical trials, treatments, specialists, diagnostics, etc. to improve their quality of life and chances of surviving brain cancer, including PCNSL. Together with GT Medical, Ono Pharmaceuticals, Endeavor BioMedicines, Medex and VOBO, we can quickly bring disease education directly to patients.”
John Hood, CEO, Endeavor BioMedicines, states “the mission of Endeavor is to help patients feel better and live longer. To accomplish this goal, we continuously work to better understand the patient journey and the unique treatment that will benefit them. Partnering with patient advocacy allows Endeavor to hear and understand these needs while at the same time increasing awareness and understanding of targeted therapies.”
Additional treatment options are necessary for PCNSL as well as increased patient access to advanced treatment options and clinical trials, which we hope will increase quality of life and survivorship for this aggressive disease with a poor prognosis as well as shape current and future treatment options and access for this patient community. *Unfortunately, even when PCNSL is treated with consolidation therapy relapse is common, and 5-year survival rates stand at only 30% to 40%. Clearly, more treatment options for this disease are needed. We expect EBCI’s Disease Education to help patients, caregivers, healthcare providers and researchers to increase patient access to advanced treatment options and specialists”.*
*Primary central nervous system lymphoma. Lauren R. Schaff and Christian Grommes. Blood.1 SEPTRMBER 2022/ Volume 140, Number 9
The EndBrainCancer Initiative | Chris Elliott Fund is dedicated to ensuring that all patients diagnosed with brain cancer, a brain tumor, or metastatic disease to the brain have equal access to advanced diagnostics, treatments, specialists and clinical trial participation. We believe that IMMEDIATE ACCESS to these options provides this patient community with the best HOPE for survival and sustained quality of life. We partner with industry, patients, researchers, advocacy groups, medical teams, hospital networks and others to educate patients and their caregivers so they can have empowered conversations with medical teams.
To arrange for interviews with EBCI President & CEO, Dellann Elliot Mydland, please contact: Charlotte Tomic, 917-882-5243;