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CERN Foundation Announces New Research Project

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Dismuke Family Delivers Speech at the 2015 Ependymoma Awareness Day

Ashley and Ingram 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.
Thank you CERN Foundation and St. Jude Children’s Research Hospital for asking us to share our ependymoma journey today. It all started three years ago. Ingram’s pre-school teacher called us Thursday, March 29, 2012, to let us know that he had a headache while they were on the playground. She said he started crying really hard and was holding the back of his head. We picked him up right away and he had another headache that afternoon.
The next morning, he had another headache and threw up so we called our pediatrician because that was a little unsettling AND because most children three-and-a-half-years-old don’t have headaches. He had so many of them over the weekend that we showed up at the doctor’s office Monday morning.
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CERN Foundation Announces “PRIME”

The CERN Foundation is pleased to announce an important new research project called PRIME, the Project for Research and Investigation of Myxopapillary Ependymoma. This initiative seeks to advance the science and improve the treatment of myxopapillary ependymoma. Myxopapillary ependymomas primarily occur in the spine. Although they are more common in adults than children, they can occur in all age groups except infants.

The idea for PRIME started when Heidi Helfand, a mother of a patient with myxopapillary ependymoma, asked why more research was not being done on this particular type of tumor. The answer she learned was an overall lack of funding for investigation and research into rare diseases. Through a grassroots effort involving relatives, friends and concerned professionals, Heidi is spearheading fundraising efforts needed to launch the PRIME. “Heidi approached us with a challenge to study a type of tumor where very little is known in the published research. The PRIME initiative is a unique opportunity to understand the biology and hopefully make a difference in the treatment of this overlooked type of cancer,” said Dr. Terri Armstrong, co-leader of the Tissue Correlative Study of the CERN Foundation.

Heidi’s 9-year-old son, Samuel, had a myxopapillary ependymoma removed in 2012. Since Samuel’s initial diagnosis, Heidi has been on a mission to understand the disease and connect with scientists and clinicians interested in researching spinal cord tumors. “We were thankful to have found the CERN Foundation and are excited to embark on this collaboration.” said Heidi.

Led by Drs. Terri Armstrong and Kenneth Aldape, the PRIME study will utilize tumor samples already collected as part of CERN’s Tissue Correlative Study.  CERN researchers will examine over 40 myxopapillary ependymoma tumor samples using whole DNA sequencing and whole genome DNA methylation profiling. They will then compare results of these molecular studies with clinical outcomes to identify potential molecular changes associated with differences in tumor recurrence. Findings obtained from this analysis will then be applied to a second cohort of samples for confirmation and validation.

To donate to PRIME, click here.

Samuel Helfand

Mother Takes Matters Into Her Own Hands

CERN Inspiration Story
In the summer of 2012, Samuel started complaining of pain in his left leg and hip. At first we thought that maybe he had just pulled a muscle or pinched a nerve. After a few visits to his pediatrician, he was referred to an orthopedic surgeon in Santa Barbara, CA and to physical therapy.  He had MRIs of his pelvis and legs, bone scans and blood tests – which all showed nothing. The doctors were stumped. They decided to do an MRI of his entire back and that is when they discovered a tumor along his spine. We were shocked! We would have never thought he had a 2-½ inch tumor along his spine in his lower back.
Samuel had surgery to remove the tumor at Children’s Hospital of Los Angeles, a participating CERN Center. The laminectomy he had relieved him of the pain he was experiencing. He healed very quickly. Two weeks after his surgery, at his follow-up appointment with his surgeon, Samuel ran down the hall. It was incredible to see his progress. 

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