CERN Progress Update
— Categories: Press Release Posted on January 25, 2016
Established in 2007, the CERN Foundation remains focused on improving the lives of children and adults worldwide diagnosed with ependymoma.
Below, we have highlighted some of our most significant work over the past eight years.
What we have accomplished:
- We have completed multi-institutional clinical trials for pediatrics and adults.
- We have established the largest clinically annotated ependymoma tumor tissue repository in the world, which is now being used to identify ependymoma subtypes that will improve personalized treatment.
- We have supported the work that led to the identification of the most common genetic alteration ever reported in the brain tumor ependymoma.
- We had over 400 ependymoma patients and caregivers participate in our Ependymoma Outcomes Projects to allow us to continue to improve our understanding of the experience and health status of those living with ependymoma.
- We created and distributed over 1,000 copies of our Ependymoma Guide to over 20 countries throughout the world.
- We founded an annual Ependymoma Awareness Day in 2012 to create greater awareness of ependymoma. This has led to increased recognition at the local and state level and to numerous events around the world.
- We are excited about some new opportunities to expand our efforts. Our team is dedicated to improving the lives of children and adults worldwide diagnosed with ependymoma.
How we are expanding (with your support!):
- With the donations we have received, we have established a CERN Research Fellowship, which supports rising young investigators focusing on ependymoma research. The 2016-7 award recipient is Dr. Vijay Ramaswamy of Dr. Michael Taylor’s lab at the University of Toronto.
- We are broadening our reach and expanding our collaborations in the U.S. and internationally. This includes leveraging resources now available to our leadership team at world-class institutions, including: Dr. Kenneth Aldape at University of Toronto (Canada), Dr. Mark Gilbert at National Institutes of Health (Maryland) and Dr. Richard Gilbertson at University of Cambridge (United Kingdom).
- We are expanding the work of the Ependymoma Outcomes Project to include evaluation of potential risk factors for the occurrence of ependymoma.
- We will be printing and distributing the 2nd Edition of our Ependymoma Guide for free to patients, caregivers and advocates this Summer of 2016.
- We are supporting ependymoma research presentations at the ISPNO and SNO meetings -the largest international brain tumor research meetings to be held in 2016.
Our focus will continue to be to improve the care and treatment of all patients with ependymoma and to inform patients and caregivers about all aspects of ependymoma through organized conferences and symposia, our website and social media.