May 2 Ependymoma Awareness Day!
May 2 Ependymoma Awareness Day!
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May 2 is Ependymoma Awareness Day!

CERN Investigators Publish Paper on the Biology and Management of Ependymomas

Ependymomas are rare primary tumors of the central nervous system in children and adults that comprise histologically similar but genetically distinct subgroups. The tumor biology is typically more associated with the site of origin rather than being age-specific. Genetically distinct subgroups have been identified by genomic studies based on locations in classic grade II and III ependymomas.
Surgery and radiotherapy are the mainstays of treatment, while the role of chemotherapy has not yet been established. An in-depth understanding of tumor biology, developing reliable animal models that accurately reflect tumor molecule features, and high throughput drug screening are essential for developing new therapies. Collaborative efforts between scientists, physicians, and advocacy groups will enhance the translation of laboratory findings into clinical trials.
Improvements in disease control underscore the need to incorporate assessment and management of patients’ symptoms to ensure that treatment advances translate into improvement in quality of life.
To read the Neuro-Oncology article, click here.
Inspirational Stories
Ependymoma Outcomes Projects

There is Still Time to Reserve Your Butterfly!

You can show your support of Ependymoma Awareness Day and the CERN Foundation by purchasing a butterfly that will be released during a special ceremony in Washington DC this Monday, May 2nd. Purchase a butterfly (or several butterflies!) to memorialize a loved one, or simply to demonstrate the need to create greater awareness of this poorly understood disease. The butterfly release will be videotaped and posted online the following day so that patients, families and supporters around the world can participate and share in this moving event. We enourage you to share your photos and videos from your awareness activities on our social media pages.
Purchase a Butterfly

Update from Dr. Vijay Ramaswamy, Recipient of the CERN Research Fellowship

Dr. Gilbert, Dr. Taylor and Dr. Ramaswamy
In late 2015, the CERN Foundation was pleased to announce that Vijay Ramaswamy, MD, PhD, was selected as the inaugural recipient of the CERN Basic Science Ependymoma Research Fellowship. Applications for this award came in from around the world and were of uniformly high-quality, making the selection process especially difficult for the selection committee! Ultimately, the committee determined that Dr. Ramaswamy’s proposal offered a strong likelihood of resulting in high-impact research in the fight against ependymoma.
Dr. Ramaswamy is now working in Dr. Michael Taylor’s lab at the University of Toronto in Canada. We recently had the opportunity to check in with Dr. Ramaswamy to get to know a little more about his background, and the important work he is doing with Dr. Taylor.
Blayne

Blayne Overcomes Ependymoma

CERN Inspiration Story

By Sabine (Blayne’s Mom)

Blayne, who is now 20-years-old, was born prematurely on September 8, 1995. When he was eighteen months, we noticed that he was not well and his balance was not what it should be. We went to the doctors a few times but he was misdiagnosed. The day before his second birthday, his neck got stiff and he began vomiting quite a bit. By then, he had lost a lot of weight. We went to the doctor, who referred us to a pediatric pulmonologist in Johannesburg. The doctor decided to perform a Lumbar puncture on him. The doctor decided he needed to be admitted to the hospital on that same day, and put my son on a string of antibiotics in case he had some form of meningitis. The next day, my son’s condition worsened, so he decided he needed to have a CT and MRI scan.

On the September 9, he was diagnosed with a malignant brain tumor, which we later found out that it was a cellular ependymoma, located in the posterior fossa part of the brain. An external shunt was inserted to relieve the intracranial pressure. The big surgery to remove the tumor was scheduled a few days later. 

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