This week the Chris Elliott Fund traveled across the country to learn and advocate on behalf of our patients.
Patient support and advocacy is not only about working daily with patients and caregivers, it is also about regularly meeting and working with industry professionals and experts on behalf of our patients.
Part of our day to day work includes meeting with patients one-on-one, but another element of our work happens outside of the Patient Support Services Center. We are actively engaged in meeting and finding the best, doctors, companies and services for brain cancer and brain tumor patients to work with.
Early in 2014, CEF President & Founder Dellann Elliott Myldand was busy out of the state meeting with many organizations in New York, across the Northeast and Southeast.
While in New York Dellann has been busy! Below are a few things Dellann shared about her trip.
Advocating within the Industry
Every minute spent away from the office is not wasted. During Dellann’s time there were meetings and discussions on many new advocacy departments in our industry, including AMGEN and Novartis. It is important for time to be spent growing and forming new partnerships with several industry peers who have significant influence on the future of brain cancer.
Friends and Colleagues at Beth Israel Deaconess Medical Center
Time was spent catching up with Dr. Eric Wong, the Beth Israel Brain Tumor & Neuro-Oncology Unit director, and his nursing staff. They discussed the many needs of brain tumor patients and the ways the Chris Elliott Fund can assist with patient load of the nursing staff at Beth Israel. Sadly, like many neuro departments across the country, they are seeing state funding continue to get cut for this type of support.
Foundation Medicine: Breakthroughs in genomic profiling
Foundation Medicine is an organization that provides the Foundation One test a “a fully informative genomic profile that helps physicians make treatment decisions for patients with cancer by identifying the molecular growth drivers of their cancers and helping oncologists match them with relevant targeted therapeutic options.” This is the only test on the market providing a complete profile while also making it as simple as possible for doctors to find clinical trials relevant to their patients. A breakthrough in personalized medicine and huge potential for any brain cancer patient who takes the test.
Dellann got to tour the labs of Foundation Medicine with Dr. Eric Wong and has great hope that it revolutionizes the standard protocol for glioblastoma patients and the future of comprehensive, personalized treatment plans.
The Aha Moment:
“In touring Foundation Medicine there was exciting discussion around the connection between the Chris Elliott Fund and Foundation Medicine. Foundation Medicine was founded out of the results of the human genome project. The GBM portion of that genome mapping was provided through research Chris Elliott Fund helped fund. An amazing aha moment, seeing the amazing progress in brain cancer research over the past 12 years and Chris Elliott Fund’s role in that history.” – Dellann
Advocacy in Atlanta
Dellann flew to Atlanta to speak at the public meeting on setting reimbursement levels for the NovoTTF device for Medicare patients. We know how important it is to advocate for this device, as every treatment option for glioblastoma is critical, at a time where there are still are so few approved options. And we know that if reimbursement levels are inappropriately set, the actual usage of the device may be minimal. All of us in the brain cancer advocacy world are looking forward to seeing their decision in February.
It is very exciting to kick-off the year with meetings across the country. 2014 is already shaping up to be another tremendous year for the Chris Elliott Fund and the future of brain cancer treatment & patients.
The information you find online is abundant and sometimes confusing. The Chris Elliott Fund is here to help break through the clutter and provide assistance in whatever, and however you need. Also call us today to get information on your Foundation Medicine test.
425-444-2215 | WeCare@EndBrainCancer.org
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