The Cord Foundation: Wyatt's Story

 


 

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

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We have had numerous inquiries from concerned people asking what they can do to help. Contributions are welcome to help fund research. Recently we heard from a man who wanted to help raise funds by asking a Philadelphia store that sells Italian modern furniture online to create a promo where a certain percentage of the sales would be donated to the Cord Foundation. The idea seemed feasible, and the owner expressed interest. One of the unexpected outcomes of the outreach to the furniture store was was my purchasing some of the exceptionally sophisticated modern furniture they carry. This partnership could be a win win situation for all involved. I am thinking of broaching the idea to friends of mine who have a webstore that sells a cool circular dog bed online. The dog beds actually look like great floor pillows. The striking designer print fabrics that cover the pillows adds to that impression. How mny people do you know have dog beds for their pets that are covered in a lovely blue and cream toile print or a stunning chinoiserie design. The fabric choices are so delicious that I want to buy the dog bed pillows even though we don't have a dog! We thank everyone who is trying to find creative ways to raise money for our research.

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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—short for A Cure for Others through Research and Development—is a 501(c)(3) nonprofit dedicated to advancing research and raising awareness for pediatric spinal cord gliomas, an especially rare and underfunded category of tumors that can cause severe disability or death in children. Rooted in a personal tragedy and driven by stories of resilience and hope, the Foundation has become a national platform for supporting research, honoring young fighters, and seeking less harmful alternatives to radiation therapy.

This article presents an in-depth overview of the Cord Foundation, including its origins, mission, structure, funded research, emotional impact, cultural significance, and its inspiring stories that fuel a nationwide effort toward finding a cure.

Mission and Purpose

The Cord Foundation exists to fund medical research and promote public awareness of spinal cord tumors in children. These tumors, such as astrocytomas and gangliogliomas, are so rare that research receives minimal federal or pharmaceutical funding. The Foundation seeks to change that by creating a national network of supporters, scientists, and affected families to drive targeted, high-impact medical discoveries.

Radiation, often used for adult treatment, is not suitable for growing children due to long-term cognitive and physical damage. Surgical options are limited by the tumor’s dangerous location in or around the spinal cord. The Foundation promotes a vision of innovation: treatment that heals without destroying quality of life.

Nonprofit Status and Governance

  • Legal Status: 501(c)(3) nonprofit, tax-exempt

  • Tax ID/EIN: 20-1671966

  • Mailing Address:
    PO Box 176775
    Covington, KY 41017

  • Scope: National and international research funding and advocacy

As a registered charitable organization, donations to the Cord Foundation are tax-deductible, and all grants are directed toward specific research projects or operational support aligned with the organization’s mission.

The Story That Started It All: Wyatt’s Journey

The Foundation’s very existence stems from the story of Wyatt, a child whose experience with spinal tumors became the catalyst for a national movement.

Wyatt was born in May 2006. Before his second birthday, he began displaying mysterious symptoms:

  • Frequent vomiting, especially in the morning

  • Choking while eating

  • Severe imbalance and stiffness

  • Crying fits

  • Neuromuscular symptoms like falling without reflex

After five ER visits with no answers, a 12-hour MRI finally revealed a solid spinal cord tumor stretching from vertebrae C2 to C7. This tumor—eventually diagnosed as a ganglioglioma—was surgically removed in a highly risky operation near the brainstem.

Wyatt survived the surgery and miraculously recovered much of his strength. He required frequent MRIs and a full medical team including neurologists, physical therapists, urologists, and ophthalmologists. Unfortunately, by 2011, the tumor returned.

A second surgery was performed, and again, Wyatt defied the odds with a rapid recovery. But the long-term prognosis was sobering: the tumor had encroached on a major blood vessel, making full removal impossible. He now faces recurring surgeries every few years.

Despite limited sensation in his hands and ongoing pain, Wyatt has remained determined and joyful. He loves horses and participates in therapeutic horseback riding. His story became the emotional backbone of the Foundation and inspired donors, doctors, and families across the country to get involved.

Funding Life-Changing Research

Recognizing the lack of commercial interest in rare pediatric tumors, the Foundation provides direct research funding to leading scientists through prestigious grant chairs.

1. The Nichole Silversteen Research Chair

  • Recipient: Dr. Jane Johnson, UT Southwestern Medical Center

  • Award: $300,000 over three years

  • Focus: Tumor formation from spinal progenitor cells

Dr. Johnson’s lab is a national leader in studying spinal astrocytomas, mapping how these tumors arise and resist treatment. The chair is named in memory of Nichole Silversteen, who passed away at 23 after a battle with spinal glioblastoma. Her family established Nichole’s CORD chapter in Philadelphia to honor her legacy.

Nichole’s brother, inspired by her struggle, pursued neurology and is training at UT Southwestern, further linking the personal to the professional.

2. The Kennedy Snyder Research Chair

  • Recipient: Dr. Shanthini Sockanathan, Johns Hopkins University

  • Award: $300,000 over three years

  • Focus: Glial cell development and spinal cord signaling

Dr. Sockanathan's research investigates the biological mechanisms that determine how cells become cancerous. The award honors Kennedy Snyder, diagnosed at age two and still courageously fighting as a young girl. Her family founded Kennedy’s CORD chapter.

Both researchers were selected not only for their academic excellence but also for their commitment to pediatric neurological disease. Their projects are expected to yield significant insights into both the development and treatment of spinal tumors.

Innovative Fundraising and Awareness Campaigns

Beyond traditional donation channels, the Foundation embraces creative fundraising models, often rooted in the personal networks of supporters:

  • A supporter in Philadelphia negotiated a charitable promotion with a modern Italian furniture retailer, where a portion of sales was donated to the Foundation.

  • Supporters are encouraged to host local events, garage sales, social media campaigns, or branded merchandise drives to raise funds.

These efforts show how philanthropy can be embedded in commerce, lifestyle, and community participation.

Community and Chapters

While the central office is based in Kentucky, the Foundation’s true strength lies in its local chapters and story-based campaigns:

  • Nichole’s CORD in Philadelphia focuses on young adult tumor victims.

  • Kennedy’s CORD engages families with young children in long-term cancer battles.

  • Other local efforts have sprung up across the country as more families face similar diagnoses.

The chapters serve both as fundraising arms and emotional support systems, sharing resources, updates, and local connections.

Who the Foundation Serves

The Cord Foundation’s work resonates with a broad spectrum of stakeholders:

  • Families of children with spinal cord tumors

  • Doctors and researchers in pediatric oncology and neurology

  • Educational institutions supporting special needs children

  • Therapists specializing in pain management and recovery

  • Donors and philanthropists focused on rare diseases and child health

The Foundation fills an emotional, informational, and financial gap often left by larger cancer charities, offering deeply personalized services and stories.

Public Perception and Media

Although the Cord Foundation doesn’t have the national media footprint of major cancer nonprofits, it is well-regarded within its niche. Its collaborations with top-tier institutions like UT Southwestern and Johns Hopkins give it scientific legitimacy, while its emotional storytelling drives engagement on social media and local press.

The website and archived materials document progress, milestones, and the experiences of funded researchers, allowing the public to follow breakthroughs and outcomes.

Challenges

Despite its impact, the Cord Foundation faces hurdles common to rare disease organizations:

  • Lack of national awareness means less funding

  • No pharmaceutical incentives to develop new treatments

  • Research is slow, especially with a small funding base

  • High emotional toll on those involved

But its model—rooted in transparency, urgency, and personal connection—remains resilient.

The Road Ahead

The Cord Foundation has several future goals:

  • Fund additional research chairs at major institutions

  • Launch educational materials to help families navigate diagnoses

  • Expand partnerships with hospitals, schools, and therapy programs

  • Build a donor endowment for sustained research

Each new chapter, each family helped, and each dollar raised brings them closer to that goal: a real, safe cure for spinal cord tumors in children.

 

The Cord Foundation is not just a nonprofit; it’s a lifeline. Born from heartbreak but sustained by hope, it transforms the suffering of a few into a mission that can help many. Through strategic research funding, emotional storytelling, and community-led fundraising, the Foundation uplifts families who face the unimaginable and empowers researchers who work toward healing them.

Its work proves that no cause is too rare, and no hope is too small to matter.

 

CordFoundation.org