email : Webview : CERN Foundation January Newsletter

CERN Foundation Supports Molecular Classification of Ependymoma Panel Discussion

The CERN Foundation Launches New Website

The CERN Foundation is committed to improving the care and outcome of people with ependymoma. In order to better reach this goal, CERN underwent an intensive website redvelopment process.

With help from Antistatic Design, we focused on providing more resources for patients and caregivers, better communication and an improved user experience.

Amy, a caregiver and mom, shared this about the CERN Foundation’s website, "the site provided me with a wealth of knowledge. There is so much information; between research, studies, and families’ stories. I never had to feel alone. I took refuge in the information provided in those early days of my son’s diagnosis. It was scary, but with knowledge, I felt I had taken some of the power back. I wasn’t quite as helpless.”

After users visit the site, we hope they will feel empowered by knowledge and apply this knowledge to their own experiences with ependymoma. The CERN Foundation website is frequently updated with information for the patient and medical community and is viewed by users all around the world. To help the CERN Foundation continue to offer these types of services, please consider making a donation and sharing with others!

VIEW NEW WEBSITE

CERN Members Participate In Ependymoma Panel Discussion

The 2016 Annual Meeting of the Society for Neuro-Oncology (SNO) was held from November 17-20 in Scottsdale, Arizona. During the meeting on Friday, November 18, the CERN Foundation supported a special evening session. This session focused on the new ependymoma classification guidelines published by the World Health Organization (WHO) in the recently revised Classification of Tumors of the Central Nervous System. The new system, that provides the classification of brain and spine tumors not only by their appearance under a microscope, but also based on their specific genetic signature, will likely have important implications for the future of ependymoma research and treatment.

This panel discussion was led by internationally recognized pathologists and neuro-oncologists who specialize in ependymoma including Drs. Kenneth Aldape, Michael Taylor, Mark Gilbert and Amar Gajjar. Over 30 CERN members, doctors, scientists and advocacy organizations (including members from the American Brain Tumor Association, National Brain Tumor Society and the Pediatric Brain Tumor Foundation) had an open and lively discussion of the utility and barriers to widespread adoption and use of the new classification system for ependymoma. The group engaged in an overview of the new guidelines for ependymoma, including a summary of the changes, asking "what does this mean for patients and how should doctors express these changes to patients"?

Michelle My Hero

By Marie, Michelle's Mom

CERN Inspiration Story

Michelle's journey started in 2007 when she started experiencing lower back pain. At the time, Michelle lived in Oakland, CA, and was working in a spa as a massage therapist. She visited her primary doctor and they thought it might be work related, so Ibuprofen and exercise were prescribed. The pain started to cause sciatic nerve pain and she lost the feeling in one of her toes. She was on vacation in early 2008 when the pain and spasms in her back became excruciating and she was advised to get a MRI of her lower back. After the results were read, she was asked to come back and have an MRI of her brain and spine.

Tumors Discovered Along Her Spine

She was sent to a neurosurgeon. The MRI revealed multiple tumors in her cervical, thoracic and lumbar regions - most being described as the size of granules of sugar. He thought the tumors were anaplastic ependymal tumors and suggested she have surgery. The cervical and thoracic tumors were centimeters larger and more worrisome. She had her first laminectomy surgery in March of 2008. The surgery was about six hours and the surgeon removed as much of the tumor as possible but she had far too many to retrieve them all. She went to a skilled nursing facility for rehab for about a week before the spasms in her back became unbearable. She was sent back to the hospital in April for a second laminectomy in the lumbar area. She began rehab again at the nursing facility and then was sent to a hospital for a more aggressive rehabilitation. She began walking with a walker and after about two weeks, she was discharged and sent home. In June, she lost the ability to stand and loss of feeling. Michelle went back to the surgeon and was scheduled for her third laminectomy and second surgery in the thoracic area.

When she recovered from surgery, she was not able to stand again. She was diagnosed with an incomplete spinal cord injury and was a paraplegic from T-10 to S-1 (unable to move from her chest down).

Friend us.

CERN Foundation PO Box 217 | Zionsville, IN 46077 US

Subscribe to our email list.