On Saturday, October 15th Vinnie Dejana will run the Hartford Marathon in support of  Kennedy and the CORD Foundation.  As a friend of Kennedy’s family, and father of two young daughters himself, Vinnie wanted to do something to recognize the strength and resilience he saw in Kennedy.  Vinnie wanted to utilize his efforts in running the marathon to support a great cause and to help find a cure for pediatric spinal cord tumors.

Please show your support of Vinnie and the CORD Foundation by making a tax-deductible donation using the button on the right.

The affect of spinal cord tumors varies greatly among those afflicted with the disease.   The following information is provided to increase your knowledge and understanding.   This is by no means a comprehensive list, but hopefully is a start.

Frequency:

• 1.1 cases per 100,000 persons
• Approx. 15-20% of CNS tumors occur in the spine
• Intramedullary lesions comprise approx.. 2-4% of all CNS neoplasms, occurring in both the pediatric and adult population
• The tumors occur anywhere from the cervicomedullary junction to the filum terminale though most frequently found in the thoracic cord.

Symptoms:

• Symptoms are not specific to spinal cord tumors and may be present in any myelopathic process
• Because of the slow-growing nature of the tumors, symptoms precede tumor discovery an average of 2 years.
• Pain often is the earliest symptom, characteristically occurring at night when the patient is supine
• Pain may be local or radiating
• Progressive weakness may occur in the arms or legs
• Patients may have impaired bowel or bladder function
• Impotence may occur
• Patients may have poor balance
• Symptoms of subarachnoid hemorrhage may be present

Jane Johnson, PhD
UT Southwestern Medical Center
The Nichole Silversteen Research Chair recipient

The CORD Foundation is thrilled to announce Dr. Jane Johnson as the recipient of The Nichole Silversteen Research Chair.  As a result, the University of Texas Southwestern will receive $300,000 over the next three years to fund her research project entitled, “Spinal Cord Progenitor Cells: Distinct Molecular Characteristics and Involvement in Tumor Formation.“  Dr. Johnson is a preeminent spine scholar and Chair of UT Southwestern Medical Center’s graduate program in Neuroscience.  Her research examines the formation, generation and treatment response of spinal astrocytomas.

This award honors the life of Nichole Silversteen who was diagnosed with a spinal glioblastoma at age 21 and tragically lost her battle with the cancer just two years later.  In her memory, her family and friends established the Nichole’s CORD chapter of the CORD Foundation in Philadelphia in 2007, hoping to spare others the devastation of their loss.  Inspired by her battle, Nichole’s brother Jason has decided to pursue a medical career in the field of neurology and will, coincidently, be completing a fellowship at Texas Southwestern sometime next year.  To learn more about Nichole’s courageous battle, click here.

On behalf of CORD Foundation, its many supporters, and most importantly those who suffer from spinal cord tumors, we would like to thank Dr. Johnson for her interest and dedication to finding a cure for this devastating disease.  We look forward to receiving word of her progress, and we pray for her success.

Shanthini Sockanathan, PhD
Johns Hopkins University
The Kennedy Snyder Research Chair recipient

The CORD Foundation is thrilled to announce Dr. Shanthini Sockanathan as the recipient of The Kennedy Snyder Research Chair.  As a result, Johns Hopkins will receive $300,000 over the next three years to fund her research project entiltled, “Molecular Mechanisms of the Glial Specification and Differentiation in the Spinal Cord.“  Dr. Sockanathan is an Associate Professor of Neuroscience at The Solomon H. Snyder Department of Neuroscience at Johns Hopkins University School of Medicine.  The focus of her laboratory is directed towards understanding the signaling events and molecular mechanisms involved in neuronal fate specification.

This award honors Kennedy Snyder who was diagnosed with a high-grade spinal cord tumor at age two and continues her battle today at the age of nine.  Kennedy and her family and friends founded Kennedy’s CORD Foundation chapter.  To learn more about Kennedy’s courageous battle, click here.

On behalf of CORD Foundation, its many supporters, and most importantly those who suffer from spinal cord tumors, we would like to thank Dr. Sockanathan for her interest and dedication to finding a cure for this devastating disease.  We look forward to receiving word of her progress, and we pray for her success.

Steven is 17 and the second of five boys in his family. He has always been a great guy with drive and ambition, honesty, and straight A’s. Most importantly, he has a great big, kind heart. Steven was 16 in the spring of 2007. He was enjoying a workout with his friends from DeSmet Jesuit High School when he noticed his hands and lower arms going numb after working out. Steven also had pain every night while he was trying to sleep and it was increasing.  Amazingly, these were his only symptoms.

We spoke with our family physician who took an MRI to rule out disc problems from lifting weights. What they found was a massive growth from C1 to T2 in his spinal cord. The neurosurgeons we consulted agreed on removal of the tumor, either partially or completely. This would leave Steven paralyzed and possibly ventilated, but definitely not intact.

Steven saw many doctors over the summer and had stayed on steroids for 4 months while we were trying to find alternative diagnoses, treatments and confidence in our decisions for his health… After consulting with adult neurosurgeons and our pediatrician, we chose neurosurgeons at St. Louis Children’s Hospital to do the biopsy as to accommodate our family.

A biopsy proved the growth to be an intramedullary spinal cord ependymoma, grade II. Radiation was proposed by our Radiologist/Oncologist, and he felt confident it could stop the tumor from growing for an unspecified amount of time, but would leave him intact for the immediate.

Steven finished his last radiation treatment October 20th and is off the steroids he needed to control pain. He has numbness of his left foot and left side from the biopsy which may or may not subside. He is anxiously awaiting his stomach pain and nausea to pass.

There was an MRI performed in November 2007, following radiation, which showed the tumor to be unchanged. Steven will have many more MRI’s in the years to come as we wait to see the progression of the tumor. He is hoping to return to school soon and just feel good again.  Steven has many good friends who are always here for him…Mike, Mitch, Dave, Brad, Adam, Ricky, Jacqueline, Critter, Caroline, Melissa, Alex, Tyler, Dan, Erin, Angie, Jill, G and G, D’s, the G’s and many more have helped encourage Steven through this time.

Steven and our family are honored and excited to be the Missouri Chapter of the Malia’s Cord Foundation. Whatever we can do to help others in our situation, we are pleased to do so.

See Steven’s other CORD Foundation webpage at http://www.stevenscordfoundation.com/

It was summer 2003 and Nichole was living with friends at the New Jersey Shore. Having just turned 21, she was getting the most out of the beach and the happy hours when her right leg became numb and difficult to control. As the numbness began to creep up her right leg and to her left foot, walking became increasingly difficult. Nichole underwent a series of MRIs, one of which revealed she has a large mass in her thoracic spine. In August of 2003, a surgery at The University of Pennsylvania revealed everyone’s greatest fear, the mass in Nichole’s spine was a spinal cord tumor known as anaplastic astrocytoma. Within weeks, Nichole’s diagnosis was upgraded to a much graver and faster moving cancer, glioblastoma.

Nichole was scheduled to begin her senior year at Ursinus College that fall. But because of the necessity of an aggressive chemo and radiation therapy, Nichole was forced to stay home and complete her first round of treatment. While taking some credits from home under the supervision of some exceptionally caring and understanding instructors, Nichole completed her treatment and entered into a period of stable disease. Nichole returned to Ursinus for the spring semester in January. Despite scattered complications due to the cancer, frequent medical appointments, and difficulty with movement, Nichole expanded her course load and graduated in May 2004 an inspiration to her class, among proud parents, her loving brother, family, and dear friends. Her triumph was rewarded with another summer at the beach with friends.

In August of 2004, Nichole began to experience a form of seizure’s called Aura’s. Medication caused leg function difficult, and although Nichole was dependent on a walker or wheelchair, she was not deterred and remained hopeful and confident and continued to preserve against her disease. On Thursday, April 21^st of 2005, Nichole entered the hospital due to a sudden bout of severe pain. What began as a typical hospital stay during her treatment took a devastating turn. Despite a weekend spent with many visitors, alert and improving, by Monday evening Nichole slipped into a coma and Tuesday afternoon, Nichole passed quietly surrounded by family and friends.

Today, Nichole’s battle serves as an example of perseverance and hopefulness to all who have met her or heard her story. Proud family and friends have started this chapter of Malia’s Cord Foundation, INC. to honor her memory and so that one day, a cure for others is found so that no one else should ever feel the devastation of this debilitating kind of cancer.

We miss you, Nichole, and love you always.

Kennedy has always been a happy, social child.  But, soon after the arrival of her little brother, when she was just two years old, Kennedy began waking up at night screaming in horror.  On car rides she would begin screaming that her neck hurt and she was inconsolable.  Doctors maintained that it was a cry for attention, even when she began to complain that her arms were itchy.

After further investigation and persistence, we got Kennedy an MRI at Yale New Haven Hospital and found that she did indeed have a problem, a spinal cord tumor that spanned from C-2 to T-2.  Kennedy was never released from the hospital.  On October 31, 2002, 95% of Kennedy’s spinal cord tumor was resected.  Pathology was mixed.  Her oncologist knew that she either had a grade II or a grade III astrocytoma, and we began treatment for a higher grade tumor.

After 6 months, Kennedy got her first clear MRI.  She remained tumor free for one year and ended chemotherapy in April of 2004.  Her oncologist was willing to consider her cured and cancer free after her next clear MRI scheduled in August, just before her 4th birthday.  Unfortunately, the results were not as what was hoped.  Her tumor had returned almost to its original size in less than three months.

Kennedy’s case was taken to Dr. Jeff Wisoff at NYU who agreed to operate again.  Kennedy’s second surgery took place on September 9, 2004.  Once again pathology was mixed.  Kennedy’s new neurooncologist, Dr. Jeffery Allen decided to treat the lower grade tumor and Kennedy has been taking Temador since October 2004.   Her tumor is still present, but remains stable.

Throughout her journey, Kennedy has consistently been a happy social child.  If it weren’t for the braces on her legs and limp hand, no one would ever imagine that she has been battling cancer for half her life.  Her fight continues.

At 2-years of age, Malia was diagnosed with an intramedullary astrocytoma, a tumor within her spinal cord. Despite two surgeries within 10 months, surgeons were unable to remove the entire tumor.

Because the tumor cells had so infiltrated the tissues of the spinal cord, full removal would have resulted in neurological damage ranging anywhere from minor sensory loss to major paralysis. Radiation, although the gold standard of treatment came with potentially devastating consequences for a young child. Although, chemotherapy had not proven very effective on this type of tumor, Malia received a 12-month chemo-therapy regimen, prescribed as a measure to temporarily inhibit further growth of the remaining tumor.

Despite the prognosis of likely recurrence, Malia is presently enjoying remission from the tumor. With the exception of MRI scans every six months, life seems quite normal for Malia and her family.

Malia is now 11 years old.  She is displaying no symptoms of her disease at this time, so her life is much like that of any other little girl. Malia is a fifth grader.  She loves school, all her classmates, and her teachers.  She enjoys dancing, singing, reading, and playing basketball.