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The CERN Foundation: What Are We Learning And How Are We Advancing?

Kimberly Wallgren

Kimberly Speaks at St. Jude Butterfly Release

Kimberly gave these remarks to patients and caregivers at St. Jude Children’s Research Hospital, who gathered to raise awareness of this rare form of brain cancer and to collaborate on finding a cure at the 2015 Ependymoma Awareness Day butterfly release.
On behalf of the leadership team at the CERN Foundation I am excited about some of the new opportunities we are privileged to be a part of in order to expand our efforts. As we look back we can celebrate monumental milestones in clinical and basic science research efforts that will be hallmarks of our success. As we look forward there are new opportunities to strengthen and expand our collaboration worldwide.
Recently, a father of a child who has ependymoma wrote to me and said “we need more than interest”. He is exactly right. We are desperate for action; action that helps translate into meaningful changes for the future of people diagnosed with ependymoma. Futures that are brighter and longer than the outlook some are currently faced with. And with that said, I am honored to announce our new CERN Foundation Research Fellowship, which will support rising young investigators focusing on ependymoma research. This research effort is made possible entirely from donations from our remarkable ependymoma community.
Your generosity will have a meaningful impact on the research being done in the ependymoma field in honor or in memorial of your loved one. It is with great humbleness and pride that we accept your contributions and continue to create activity that is undoubtedly needed.

CERN Progress Update 

Established in 2007, the CERN Foundation remains focused on improving outcomes and treatment for those with ependymoma. Below, we have highlighted our most significant accomplishments over the past eight years, as well as some of the exciting new initiatives we are currently working on. 

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 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 are establishing a CERN Research Fellowship, which will support rising young investigators focusing on ependymoma research.
  • 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).
  • CERN is serving as a conduit for an exciting new research initiative thanks to generous donations specifically geared toward myxopapillary ependymoma, “PRIME”, designed to improve our understanding of the cause and to improve the treatment of myxopapillary ependymoma.

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.

A Family’s Diagnosis Inspires Book, “If You Love Me, Take Me Now”

CERN Inspiration Story
I had symptoms for more than a year. It started with spontaneous bouts of hiccups. Whenever I ate or drank, I would start hiccupping. I was forced to stop eating or drinking until they passed. Sometimes, the hiccups would start for no apparent reason and they came any time throughout the day, even while sleeping.
In August of 2003, I finally went to see my doctor. He sent me to a gastroenterologist because he thought it might be stomach related. It took a month or so to get the appointment and then he treated me for acid reflux for another few months. In the meantime, I was traveling around the world on business and burning up more time. Around Thanksgiving I started to have difficulty swallowing. My ears started to ring and I had this strange sensation that felt like my head was in a bucket of ice water. I also began to have headaches. I went back to my primary doctor in late January and told him of these new symptoms. By now I suspected that something was seriously wrong inside my head, but I didn’t want to think tumor. My wife and I actually joked about it being a tumor. My doctor finally sent me to a neurologist on Monday and a few days later, I had an MRI. The neurologist called me right away with news that they had found an egg-sized tumor attached to my brain stem and in the forth ventricle.
EAD Video Ependymoma Guide Inspirational Stories
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