The Cord Foundation: Wyatt's Story
This site was created in 2006.
Content is from its archived pages and other outside sources
About The Cord Foundation
Each year thousands of children are diagnosed with spinal cord tumors or gliomas and have no safe treatment options that provide a cure without debilitating consequences. Radiation is typically the prescribed therapy for treatment of this type of tumor in young adults, but can prove devastating for a small child, especially as the child continues to grow. So our only hope is that medical researchers can quickly develop a safer and more effective alternative to radiation.
Unfortunately, these types of spinal cord tumors are so rare that research toward that means is grossly under funded. In an attempt to speed up research efforts, we have created a nonprofit, charitable organization which we have fittingly named The CORD Foundation.
CORD stands for “A Cure for Others through Research and Development”.
Our mission is to find a cure for pediatric spinal cord gliomas by promoting medical research and increasing public awareness of spinal cord tumors.
The CORD Foundation is a 501(c)(3) non-profit, tax-exempt organization by the Internal Revenue Code.
Our tax identification number is EIN 20-1671966.
Donations and correspondence should be directed to:
CORD Foundation
PO Box 176775
Covington, KY 41017
Statement:
Dedicated to finding a cure for pediatric spinal cord gliomas by promoting medical research and increasing public awareness
Values:
Support research that maintains a respect for human life from the point of conception
Promote family values throughout all stages of fund raising
Encourage compassion for patients and families afflicted with spinal cord tumors
Remain dedicated to the needs of the patient
Vision:
Establish ties with prominent medical research professionals and institutions
Support efforts to find treatment options that may prove to be a less damaging and more effective alternative to radiation
Network with other organizations that are devoted to providing various types of support to patients and families afflicted with spinal cord tumors
Once successes are made in the area of pediatric spinal cord gliomas, efforts will be focused on treatments and cures for other pediatric central nervous system tumors in the spinal cord and brain
Strive to apply advancements in the pediatric field to the treatment of similar gliomas in adults
The Foundation
Malia and thousands of other children with similar afflictions have no safe treatment options that provide a cure without debilitating consequences. Radiation is typically the prescribed therapy for treatment of this type of tumor in young adults, but can prove devastating for such a small child, especially as the child continues to grow. So our only hope is that medical researchers can quickly develop a safer and more effective alternative to radiation. Unfortunately, these types of spinal cord tumors are so rare that research toward that means is grossly under funded.
In an attempt to speed up research efforts, we have created a nonprofit, charitable organization which we have fittingly named Malia's CORD Foundation. CORD stands for “A Cure for Others through Research and Development”. Our mission is to find a cure for pediatric spinal cord gliomas by promoting medical research and increasing public awareness of spinal cord tumors
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MALIA'S STORY
2006
Nearly two years ago, 4 year old Malia was diagnosed with an intramedullary astrocytoma, a tumor within her spinal cord. Despite 2 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. Thankfully, Malia has suffered no appreciable deficits as a result those two surgeries.
Malia is presently in the final stage of a 12-month chemo-therapy regimen prescribed as a measure to temporarily inhibit further growth of the remaining tumor. Her scans show that it is indeed accomplishing that goal. But once the treatment ends, the tumor is likely to begin growing unimpeded as it did before. Amazingly, she has experienced minimal nausea and has a full head of beautiful blond hair. With the exception of weekly blood tests, monthly chemo treatments, and MRI scans every three months, life seems quite normal for Malia and her family. She is active and happy, attending preschool, enjoying dressing as a princess, and playing with her brothers and cousins. Everyone agrees she is such a joy to all who meet her.
UPDATE:
Malia Five years ago, 2 year old 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 recurrance, 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 6 ½ 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 first grader. She loves school, all her classmates, and her teachers Ms. Speed and Ms. Baker. She enjoys dancing, singing, reading, and playing soccer.
Her September scan and follow up with Dr. Wagner, her oncologist, revealed no evidence of tumor rergrowth. Her remission continues. We have been incredibly blessed. Malia's next scan is scheduled for May 31st, 2007.
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Wyatt’s Story
Wyatt was born on May 4, 2006. A year later, at the age of one, is when his symptoms really became noticeable. The symptoms included:
- Crying uncontrollably at times
- Frequent vomiting, especially upon awakening
- Choking on food or beverages
- Restricted movement in his neck
- Poor balance as he favored leaning to his left
- When his lack of balance caused him to fall, he would not put out his arms to catch himself.
From May to August of that year, we made five separate trips to the hospital emergency and they could not come up with any answers. Finally in August, they did a 12 hour M.R.I. (Magnetic Resonance Imaging) which is a medical imaging technique used in radiology to visualize detailed internal structures. The M.R.I. revealed a solid mass inside his spinal cord starting at level C2 and going all the way down to C7. (The cervical vertebrae are numbered, with the first one (C1) located closest to the skull and higher numbered vertebrae (C2-C7) proceeding away from the skull and down the spine.)
They informed us that his brain was swollen as well as his brain stem and cord. They admitted him to the Critical Care Unit until they could get the swelling down to where it was safe to try to surgically remove the mass. Five days later, after heavy doses of steroids were administered, a 12 hour surgery was performed and the tumor mass removed. After examining the tumor, pathologists determined it was a ganglioglioma tumor, a tumor that arises from ganglion cells in the central nervous system.
The surgery was extremely risky due to its delicate location, so close to the brain stem which controls all major body functions. And damage to the spinal cord could cause paralysis from the point of injury down, which for Wyatt would be from the neck down. That paralysis would have the effect of paralyzing his breathing capabilities.
Wyatt came out of the surgery grabbing at and trying to remove his breathing tube. He was able to move his arms and eventually regained his sense of balance. Happiness was all of ours once again.
It was decided that M.R.I.’s needed to be administered every three months to monitor the possible re-growth of the tumor.
He came to be monitored by a large team of physicians, an oncology neurologist, a neurosurgeon, a physical therapist, an occupational therapist, a physiotherapist, a urologist, a cardiologist and an ophthalmologist specialist.
In the summer of 2011, it was clear that the tumor had returned. This was confirmed by the increase in his symptoms and the latest M.R.I. showing growth. The symptoms at this point included:
- Trouble walking
- A lot of pain in his neck, back and legs
- Slowly losing control of his bladder and bowels
The tumor appeared larger on the M.R.I. spinal cord transports, causing the conclusion that another life-threatening surgery needed to be done. On September 19 of 2011, a second surgery was performed to remove the new tumor. We were told that this type of tumor is able to be fully resected (removed surgically) with a good chance of not growing back again.
We were elated at the report from the surgeon immediately following Wyatt’s surgery. It appeared the entire tumor had been removed. And Wyatt amazed all of us at how fast he began his recovery as we was sitting up the next day and was soon bright eyed and smiling to all who came to see him, to the utter amazement of all his visitors, family and friends.
He expressed daily determination to get back home to his farm and after one week in DeVos Children’s Hospital and one week at Mary Free Bed Rehabilitation Hospital, Wyatt got his wish as he returned to his beloved farm and life on the farm.
But at first he still had to go to outpatient therapy four to five times a week. But by the end of February here in 2012, he has now been decreased to two times a week and both times on the same day. The pressure type therapy they apply has been especially helpful with his headaches, which he suffers on a daily basis. He also will be having therapeutic horseback riding sessions, when the winter weather breaks. Wyatt loves horses so this will be an amazing and exciting form of therapy for him.
Wyatt has a tougher time in the mornings and is a very slow starter. He suffers the most pain in the morning after lying down and putting pressure on his spine during his sleeping hours but once he gets going, it is hard to slow him down.
He still is scheduled for M.R.I.’s every three months and his latest one in December revealed a spot that had his surgeon, Dr. Stanley Skarli, concerned. He said it could be a tumor, scar tissue, or imaging. He said only time and further M.R.I.’s will tell.
But then the oncologist caused us new consternation with her diagnosis that the tumor is located next to a large blood vessel that feeds the spinal cord. She tells us that the tumor will never be able to be completely removed. She said her prognosis is that Wyatt will be able to live into his teens with surgeries every four to five years to de-bulk the tumor and relieve his symptoms.
So here we are waiting for another M.R.I. in March and hoping and praying for the best but prepared for the worst of the above diagnoses. Many prayers are very much needed. And we are now involved in actively supporting research into these tumors in hopes a cure can be found in the not-too-distant future.
At this point in time, Wyatt drops a lot of things due to his inability to feel with his hands from the injury to the spinal cord but it is amazing to see how he compensates. Sometimes he has a lot of painful tingling that he likes to call “bee stings.” This sensation is most likely due to the nerves being restored after surgery but we are still not sure if he will get the feeling back over time. They say it can take up to eighteen months to know.
Currently, Wyatt is homebound schooling due to his pain levels but hopes to go back to half days at school very soon. He is registered as a kindergartner at Alto Elementary School.
RESEARCH
CORD Foundation Awards Grant to Dr. Jane Johnson
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.
CORD Foundation Awards Grant to Dr. Sockanathan
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.
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.
The page has been created by using archived content from the original site as well as content from other sources.
More Background on The Cord Foundation
The Cord Foundation is a charitable organization focused on advancing research into pediatric spinal cord tumors, particularly gliomas. Founded to address the lack of safe and effective treatment options for children suffering from these rare and life-threatening tumors, the foundation's mission centers around promoting medical research and raising public awareness. Gliomas, especially in the spinal cord, are highly complex and often present challenges in treatment due to their location and the delicate nature of the surrounding tissue.
History and Founding
The Cord Foundation was established to bridge the gap in funding and research for spinal cord tumors, which receive relatively little attention due to their rarity. The organization takes its name from "A Cure for Others through Research and Development" (CORD), reflecting its commitment to supporting innovative medical research. It has created chapters, such as the one in Philadelphia, in honor of individuals like Nichole Silversteen, who succumbed to a spinal glioblastoma. These chapters raise funds and awareness in memory of those affected by these devastating conditions.
Press and Media Coverage
While the foundation may not have widespread media coverage compared to larger cancer foundations, it has received attention in medical and scientific communities. It supports groundbreaking research, like the $300,000 grant awarded to Dr. Shanthini Sockanathan at Johns Hopkins University to investigate molecular mechanisms involved in spinal cord gliomas. This research aligns with modern efforts in immunotherapy and molecular targeting, both promising new directions for tackling spinal cord tumors. These initiatives highlight the Cord Foundation’s role in supporting cutting-edge science in a field that is otherwise underfunded.
Known For
The foundation is best known for its efforts to fund research projects and create chapters that foster community involvement in raising awareness and resources. These projects focus on both increasing understanding of spinal cord tumors and exploring treatment options, particularly for pediatric patients. Unlike more common tumors, spinal cord gliomas require highly specialized treatments. The Cord Foundation has helped drive advances in surgical techniques and innovative therapies like radiation sensitizers, which aim to minimize the damage to healthy tissues during cancer treatment.
Audience and Community
The Cord Foundation’s primary audience includes families of children with spinal cord tumors, researchers in pediatric oncology, and medical professionals seeking better treatments for these rare conditions. The organization is deeply rooted in community efforts, with families of affected children often playing an active role in fundraising and advocacy. For instance, partnerships with businesses have been established, such as those with online retailers, to raise funds through promotional events. The foundation is also dedicated to connecting these families with the latest information about treatment advances and clinical trials.
Cultural and Social Significance
Though smaller in scope than national cancer organizations, the Cord Foundation holds significant cultural and social importance within the pediatric cancer community. Its advocacy for a rare and overlooked cancer type highlights broader issues in cancer research funding and patient care, particularly for children whose treatment options are limited. The foundation's work in promoting patient-centered research—aiming for safer, less invasive treatment methods—contributes to the larger conversation about pediatric cancer care and the need for specialized research that does not receive large-scale funding.
Details and Insights
One of the most striking aspects of the Cord Foundation’s work is its commitment to finding innovative solutions for extremely rare tumors. The foundation’s support for research projects at renowned institutions, such as Johns Hopkins University and the University of Texas Southwestern, demonstrates its dedication to advancing both basic science and clinical applications. Many of the projects it funds aim to understand the genetic and molecular characteristics of spinal cord tumors, which could lead to more personalized and effective treatments for these conditions.
The foundation also plays a critical role in supporting families dealing with these diagnoses by providing access to the latest research and fostering a community where families can share their experiences. This combination of cutting-edge research support and family-focused outreach helps set the Cord Foundation apart in the realm of rare disease advocacy.
Specifics and Examples
An example of the foundation’s impact can be seen in its partnerships with research institutions like the University of Texas Southwestern, where Dr. Jane Johnson leads a project funded by the foundation to study spinal cord progenitor cells. This research has the potential to uncover new insights into how these cells contribute to tumor formation, which could ultimately lead to better treatment strategies for patients.
Another significant project is the funding of research on molecular mechanisms of glioma differentiation, which could help improve the precision of existing treatments such as surgery and radiation. These types of projects illustrate the Cord Foundation’s focus on not only understanding spinal cord tumors but also improving the quality of life for those affected by them through more effective and less harmful treatments.
The Cord Foundation is a critical player in the fight against pediatric spinal cord tumors. Its support for research into the genetic and molecular underpinnings of gliomas, coupled with its community outreach and fundraising efforts, provides a comprehensive approach to addressing this rare but devastating disease. While it may not have the visibility of larger cancer organizations, its impact is felt by the families and researchers working toward better treatments and, ultimately, a cure. By focusing on both scientific innovation and patient-centered care, the Cord Foundation stands out as a vital advocate for children battling spinal cord tumors.