PLATINUM2023

NeuroKids

Training | Treatment | Research

Fairfax, VA   |  https://neurokids.org/

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Mission

Protecting the world’s children from the complications of hydrocephalus and spina bifida through training, treatment, and research.

Ruling year info

2021

Chief Executive Officer

Derek Johnson

Main address

10169 Bessmer Lane

Fairfax, VA 22032 USA

Show more contact info

EIN

85-1404999

NTEE code info

Human Service Organizations (P20)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Hydrocephalus is a global problem that affects more than 500,000 children every year, with devastating consequences. Since the 1960’s, hydrocephalus has been treated by inserting a ventriculoperitoneal (VP) shunt into the brain, draining cerebrospinal fluid (CSF) from the brain’s ventricles into the abdomen, where it is absorbed. The majority of shunts fail, with more than half failing in the first few years and most failing at least once, and often multiple times. The risk of shunt-failure persists throughout the life of a shunt-dependent person. Shunt dependency is even more dangerous in lower-income countries, where access to basic neurosurgical care is very limited. Newborn infection is the leading cause of hydrocephalus in lower-income countries. Post-infectious hydrocephalus (PIH) is, thus, a condition of poverty. In both high and low-income countries, spina bifida is typically the second most common cause of infant hydrocephalus. All three of these are preventable.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Egypt

We launch our first center at Ain Shams University in Cairo, Egypt. The lead surgeon is training counterpart colleagues at Cairo University, expanding the footprint for ETV/CPC to be accessible for nearly all children in and around Cairo.

Population(s) Served
Low-income people
Extremely poor people
People with physical disabilities

Partnership with Irmandade da Santa Casa de Misericórdia de São Paulo and Dra. Giselle Coelho to treat children with hydrocephalus

Population(s) Served
People with physical disabilities
People with physical disabilities
Extremely poor people
Low-income people

Partnership with neurosurgeons to treat children with hydrocephalus and spina bifida

Population(s) Served

Partnership with neurosurgeons to treat children with hydrocephalus and spina bifida

Population(s) Served

Partnership with neurosurgeons to treat children with hydrocephalus and spina bifida

Population(s) Served

Partnership with neurosurgeons to treat children with hydrocephalus and spina bifida

Population(s) Served

Partnership with neurosurgeons to treat children with hydrocephalus and spina bifida

Population(s) Served

Partnership with neurosurgeons to treat children with hydrocephalus and spina bifida

Population(s) Served

Partnership with neurosurgeons to treat children with hydrocephalus and spina bifida

Population(s) Served

Partnership with neurosurgeons to treat children with hydrocephalus and spina bifida

Population(s) Served
Extremely poor people
Low-income people
People with physical disabilities
Extremely poor people
Low-income people
People with physical disabilities
Extremely poor people
Low-income people
People with physical disabilities
Extremely poor people
Low-income people
People with physical disabilities
Extremely poor people
Low-income people
People with physical disabilities
Extremely poor people
Low-income people
People with physical disabilities
Extremely poor people
Low-income people
People with physical disabilities
Extremely poor people
Low-income people
People with physical disabilities

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of children with disabilities receiving early intervention services

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Neurosurgical interventions for the treatment of hydrocephalus

Number of patients undergoing surgical procedures

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of clinic sites

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

NeuroKids exists to reduce the global burden of hydrocephalus and reduce the burden of shunt dependency. Finding more effective treatment alternatives to shunt placement is particularly important for patients in low-resource environments. Dr. Benjamin Warf, Chairman of NeuroKids, pioneered an alternative, low-cost treatment–the endoscopic third ventriculostomy with choroid plexus cauterization (ETV/CPC, the “Warf method”). In carefully designed clinical trials, Dr. Warf demonstrated that this one-time treatment method results in outcomes that are as safe and as effective in promoting brain growth and development as shunt placement. The Warf method requires far less medical infrastructure and life-long post-surgical maintenance than shunts, since nearly all ETV/CPC failures occur within the first several months, while the risk of shunt failure persists throughout life. By training neurosurgeons in the Warf method, we can eliminate shunt dependency for over half of all children treated in our network. By 2026, we will launch twenty centers around the world, focusing on places where access to care is limited. We will connect more than twenty neurosurgeons with the mentoring, equipment, and training necessary to make the best care accessible to all children with hydrocephalus and spina bifida. Through this network, more than 5,000 children will receive life-saving surgery.
Likewise, once we know the causes of the newborn infections responsible for the majority of hydrocephalus in lower-income countries, we can work on ways of preventing and better treating such infections to prevent the huge toll that these brain infections take on children. Over the past 15 years, with direct help from the National Institutes of Health, we have discovered what causes these infections in Uganda, and have developed the technology to unravel the mystery of these infections in other countries. We will put in place the testing and treatment protocols to improve outcomes from these infections at selected sites where we are training neurosurgeons in the Warf method.

Through an innovative model utilizing distance learning, onsite training, remote presence technology for surgical mentoring, and the provision of the necessary equipment, we can train surgeons at a scale to make advanced care (like the Warf method) accessible for the maximum number of children at major medical centers in lower-income countries. Our self-replicating model focuses on in-depth coaching and mentoring relationships with strategically selected neurosurgeons, incentivizing and positioning them to, in turn, serve as virtual and on-site trainers for others in their regions, leveraging their location and shared language to expand the network. This model removes barriers to collaboration and training—namely, eliminating trainee time away, optimizing on-site time for instructors and significantly reducing the costs of training.
By capitalizing on shared relationships and infrastructure at these partner treatment sites, NeuroKids will also train and equip clinical personnel to collect CSF samples from suspected patients with PIH for preparation and shipment to our partners at Yale's Center for Global Neurosurgery for analysis and testing.

NeuroKids’ Advanced Training Program using Virtual Presence Technology (ATP|VPT) will train more neurosurgeons in a shorter period of time and with greater skills acquisition and more durable practice competencies than the traditional model. These advancement in the new training model will be illustrated in several ways:
Train more neurosurgeons in the Warf method in a shorter period of time and with greater skills acquisition and more durable practice competencies than traditional models. These advancement in the new training model will be illustrated in several ways:
1. The virtual model allows simultaneous mentorship of neurosurgeons – unimpeded by geographic distance – allowing NeuroKids to train neurosurgeons at a far greater rate than the prior model.
2. The recruitment and development from novice to expert neurosurgeons will generate an ever-increasing stable of experts that can then train additional neurosurgeons in an exponential pattern.
3. Conducting both the in-person and remote training session at the trainees own institution/hospital ensures that skills obtained are immediately transferable to the trainees home setting.
4. The training longevity offers mentor and pupil to establish a relationship over time, facilitating gradual, stepwise growth in surgical skills, comfort, and efficiency. More durable skills are generated.

Our team of trainers are the foremost experts in the world in the Warf method. Along with Dr. Warf, our team includes pediatric neurosurgeons from prestigious neurosurgery centers in the United States and some of the highest volume hydrocephalus treatment centers in the world, and is comprised of Americans, Ugandans and Nigerians. Collectively, they have performed the Warf Method in over 10,000 children.

Our pathogen discovery work is led by Dr. Steven Schiff, a pediatric neurosurgeon with interests in neural control engineering, sustainable health engineering and global health. He founded the Center for Neural Engineering at Penn State University, wrote the first book on Neural Control Engineering (MIT Press, 2012), and is now developing the Center for Global Neurosurgery at Yale University. He received the NIH Director's Pioneer and Transformative Awards in 2015 and 2018, respectively, which have enabled him to pursue his interests in the sustainable control of infant infections in the developing world. Such infections continue to take the lives of nearly a million infants a year globally, and in the survivors generate the largest group of infant hydrocephalus cases and the greatest need for neurosurgery in young children worldwide.

In our first year, we launched new partner treatment centers in Cairo, Egypt and São Paulo, Brazil and are actively mentoring and supporting surgeons in Luanda, Angola and Kampala, Uganda. Dr. Warf and Dr. Michael Dewan trained Dr. Assem Abdel Latif in Egypt and Dra. Giselle Coelho in Brazil in the Warf method. Across all four centers, more than 150 children received life-saving surgery in 2022.

Looking ahead to 2023, we will continue to support five surgeons in Uganda, Angola, Egypt and Brazil and we will train and mentor five more in Indonesia, Nigeria, Morocco, Jordan and Kenya. These nine centers will provide an estimated 400 surgeries for children in 2023.

Work is underway with Dr. Schiff to identify the pathogens responsible for post-infectious hydrocephalus at Tenwek Hospital in Kenya and at Mulago National Referral Hospital in Uganda. In his new role as Vice Chair of Yale’s Global Neurosurgery program, Dr. Schiff is building out the team required to support the analysis work in order to ultimately prevent this dreadful condition in children throughout the world.

In March, our team will train surgeons at the University of Nigeria-Enugu’s hospital where we anticipate they will perform over 50 hydrocephalus surgeries in the first year. Less than a week later, we will train a group of neurosurgeons at the Rabat Center in Morocco, one of the leading neurosurgical training programs on the African continent.

As we look to the second half of 2023 and into 2024, plans are underway to launch six centers in Jordan, Kenya, Pakistan, Indonesia and Cote d’Ivoire. All are high-volume hospitals that see a lot of children with hydrocephalus and spina bifida and are already positioned as centers of neurosurgical excellence in their countries. In June, our team is traveling to Amman, Jordan to train a colleague at a hospital sees over 500 cases of hydrocephalus annually and serves families throughout the Middle East. Later this summer, we are training neurosurgeons in Mombasa, on the Kenyan coast, in the Warf method. Children with hydrocephalus and spina bifida from all over Kenya are referred there. We are working with a neurosurgeon at the Aga Khan Hospital in Karachi to develop a training model to take the Warf method to public hospitals around the capital, a city of over 20m people. We are actively mentoring a neurosurgeon in Medan, Indonesia to strengthen their program and help increase the number of kids they can treat. Additionally, we are teaming up with a French-speaking West African surgeon to train neurosurgeons in Cote d'Ivoire, Togo and elsewhere in Francophone West Africa.

Financials

NeuroKids
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

NeuroKids

Board of directors
as of 09/06/2023
SOURCE: Self-reported by organization
Board chair

Dr. Benjamin Warf

Harvard / Boston Childrens Hospital

Term: 2023 - 2026

Michael Dewan

Vanderbilt Children's Hospital

Jacob Lepard

Children’s Healthcare of Atlanta/Emory University

Ashley Birch

Boston Children's Hospital

Sergio Mainetti

InterSOS

Sarah Wineland

Deloitte

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 1/31/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 01/31/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.