The 2019 NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors) Meeting was held on April 29, 2019 at NIH in Bethesda, Maryland. The meeting brought over 100 attendees across neuro-oncology specialties together to discuss central nervous system (CNS) tumor clinical studies. 

The CERN Foundation is honored that the efforts of our collaborative work played a significant role in the development of the NCI-CONNECT program at the National Cancer Institute by serving as a model for rare disease research. This collaborative effort continues to advance the field of ependymoma and now extends into other rare tumor types. We are beyond proud to serve in this capacity and are grateful for everyone involved. None of these advancements would have been possible if it weren’t for you and your participation in these efforts. We were honored to attend the NCI-CONNECT annual meeting to learn and collaborate. Together, we have made tremendous progress in understanding the disease and continue to seek out opportunities to partner with groups who are dedicated to identifying better treatments for ependymoma and ultimately finding a cure. 

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By Adam H.

CERN brings two ependymoma survivors together across the country and globe. Adam is from California and Allie is from Kansas. Both were diagnosed with ependymoma, in almost the same spots in the left occipital lobe.

Those of us with ependymoma know that cancer can take so much from our lives, so very much, but there is a side of cancer that we often overlook, and that’s the gifts of cancer. It’s odd to say it, but cancer can bring people together, families, friends, communities together to rally around us and support us, to focus on life, keeping what we have together, and giving us the strength to press on. It makes life real and deep, more meaningful than what we may have ever experienced before. The CERN Foundation is a gift, fighting cancer, and supporting ependymoma patients in ways we could not do as individuals. In some respects, despite the pain and the uncertainty, cancer can be a gift. For Adam H. and Allie M. and their family and friends learned the goodness of cancer amongst the pain of cancer.

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By Amy V.

CERN Inspiration Story

In late January of 2009, a major multi-state ice storm hit our area of Western Kentucky. It was devastating for many but became a blessing in disguise for me. A week or so after it hit, the ice still remained in many areas including my driveway.  When I came home from work one afternoon, I slipped on the ice and fell hard on my lower back even though I was being as careful as possible. I was able to get up and I thought I was going to be okay, but the next day I started feeling severe pain on the right side of my back and hip that radiated down my right leg as well. So, I went to our local clinic to be evaluated and they ordered an X-ray. No fractures were detected and I was given a muscle relaxer and told to ice the area and take Advil for the pain. I was scheduled to be on vacation that next week in Florida to visit my parents, so I decided to go ahead with my travel plans since the warmth and sunshine would be good for my recovery. Well, I made it to Florida and of course the change of scenery helped my morale, but not the pain. It continued to progressively get worse and sitting was the most uncomfortable of positions. I either had to be standing up or laying down to get any relief at all.  Once I returned home, I immediately called my doctor and she ordered an MRI. 

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