2019 End of Year Update
— Categories: Press Release Posted on December 20, 2019
Hear a few of the important projects and activities the CERN Foundation was able to participate in 2019.
Greetings CERN Community,
As the year comes to an end, I want to take the opportunity to highlight a few of the important projects and activities the CERN Foundation was able to participate in thanks to your support. This year has offered unique and encouraging opportunities for the ependymoma community. I am always humbled by the wonderful people CERN is privileged to interact with.
- Announced the Ependymoma Fund for Research and Education with the National Brain Tumor Society (NBTS)
- Completed the second year of funding for two scientific ependymoma fellowships to Dr. Claire King and Dr. Kristian Pajtler
- Announced the second CERN Foundation and Robert Connor Dawes Pediatric Ependymoma Fellowship to Dr. Chan Chung beginning in 2020-2021
- Provided direct referral support to over 200 families
- Supported and attended the Ependymoma Consensus Meeting and the Society for Neuro-Oncology Meeting
- Attended the International Brain Tumor Alliance World Summit and spread awareness about ependymoma by speaking to advocates from over nine countries worldwide
- Hosted the 2019 Ependymoma Awareness Day event in Washington, DC with the NBTS
- Distributed over 850 physical copies and over 6,000 digital copies of the 2nd Edition Ependymoma Guide
- Partner of the NCI-CONNECT program, referring more patients with ependymoma than any other organization
Many of these efforts have a synergistic relationship that helps to put ependymoma on the forefront of discussion and agenda. We have incredibly valuable relationships with medical professionals, other professional organizations, and advocacy groups that continue to be useful and meaningful in advancing the next steps for ependymoma research. There is exciting work being done by our CERN Advisors, all based on work previously supported by the CERN Foundation. Our foundation was the catapult to launch the current work being done in the rare disease space and many remark the unique relationships that were developed over the years have been instrumental in new efforts that have grown beyond our organization. This is worth celebrating!
I always pause when writing the closing of the end of year letter. While I want to communicate my enthusiasm for the efforts and dedication of our community, I know some of you reading this find yourself in a very difficult season. I have been there too, in my own way, and there aren’t words or solutions I can offer right now that are enough. Rather, it is my wish that you might find a thread of hope in this message for the good things to come. Best wishes for a warm and bright 2020.
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President of the CERN Foundation