Creating a Community of Support

aka Child Neurology Foundation   |   Lexington, KY   |


To serve as a collaborative center of education and support for caregivers and their children living with a neurologic condition by strengthening connections between patients and their families, physicians, other healthcare professionals, and advocacy and industry partners.

Ruling year info


Executive Director/CEO

Ms. Amy Brin

President, Board of Directors

Dr. Scott L. Pomeroy MD, PhD

Main address

249 E. Main St. Suite 205

Lexington, KY 40507 USA

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NTEE code info

Alliance/Advocacy Organizations (B01)

Pediatrics Research (H98)

IRS filing requirement

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

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Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The Child Neurology Foundation connects partners from all areas of the child neurology community so those navigating the journey of disease diagnosis, management, and care have the ongoing support of those dedicated to treatments and cures. Our expanding network of patients and caregivers, volunteers and advocates, researchers and clinicians is committed to helping one another along the path that leads to the best quality of care — and the highest quality of life—for every child. The Child Neurology Foundation is a national non-profit that works to support the whole child neurology community. We are the only non-profit in the child neurology advocacy space that was started by physicians, and to this day we have strong physician leadership on our Board of Directors. We bring together the voices of parents and caregivers, patients, physicians, industry partners, and other advocacy organizations.

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?

SUDEP Awareness

CNF believes in building partnerships based on open communication between families and their child neurology health care team. We are working on a computer-based tool to automatically remind doctors to talk about the risk of Sudden Unexpected Death in Epilepsy (SUDEP) with parents during doctor visits. To help with this effort, we’ve created resources in both English and Spanish, about SUDEP risks, but also customizable Seizure Action Plans, too. We will continue to evolve our efforts to meet the needs of our community including broader awareness campaigns and screening tools.

Population(s) Served
Children and youth

RISE Family Grant offer $1,000 grants to families living with a pediatric neurologic condition to assist with expenses not covered by insurance.

Rising Tides Grants are $10,000 grants to support our peers and help keep every aspect of the advocacy ecosystem healthy.

The Harnett Mini-Grant was founded by Mr. Michael Harnett in January 2014 as a memorial to his nephew, Brendan Michael Harnett, who was diagnosed with infantile spasms and passed away before his first birthday. Each year during Infantile Spasms Awareness Week, one $1,000 mini-grant is awarded to a child with infantile spasms and his caregivers to cover the cost of medical devices, treatments, therapies, or other services not covered by insurance. Learn more about Brendan and the mini-grant application process.

Population(s) Served
Children and youth

The Child Neurology Foundation (CNF) connects partners from all areas of the child neurology community to optimally offer education and support to children living with neurologic conditions and their families.

Members of the CNF Partners e-mail list comprise a multidisciplinary group committed to helping one another along the path that leads to the best quality of care and the highest quality of life.

CNF Partners receive the weekly eNewsletters—a way to share patient educational information, advocacy events, scholarships, grants, and more.

See the archives for past issues and information about submission. Contact [email protected] with any questions.

Population(s) Served
Children and youth

Infantile spasms (IS) is a rare, but serious form of epilepsy occurring in children, usually under one year of age.

In 2015, CNF partnered with the Tuberous Sclerosis Alliance (TS Alliance) to lead a multi-year Infantile Spasms (IS) Awareness and Education Initiative. IS efforts are showcased during Infantile Spasms Awareness Week (ISAW), which is held annually during the first week in December. Learn more

To further expand the IS initiative, CNF convened two forums in 2016 that brought together epilepsy advocates and leaders from provider member societies. The group discussed a comprehensive strategy to raise awareness for infantile spasms. The group now includes over 30 national and international entities and has been dubbed the Infantile Action Network (ISAN).

Brendan Harnett Infantile Spasms Mini-Grant: Each year during ISAW, one $1,000 mini-grant is awarded to a child with infantile spasms and his caregivers to cover the cost of medical devices, treatments, therapies, or other services not covered by insurance.

Population(s) Served
Children and youth

CNF has always worked to respond to the greatest needs of the child neurology community. At this time, the greatest need is to provide children and families with neurologic conditions with the support that they need to care for their children in their homes during a time of social isolation. In response to the COVID-19 pandemic, CNF has pivoted to create targeted resources and mini-grants to support children and families in our community during these unprecedented times.

As the pandemic evolves, CNF will continue to respond to the greatest needs to help serve the child neurology community. We believe that rising tides lift all boats, and that by working to uplift individuals and organizations across the child neurology landscape, that we will get through this together. Standing in our value of transparency, CNF will continue to provide regular updates to our community via our blog, social media channels (linked on side menu), and newsletters.

Due to the pandemic and the rise of telehealth, in 2021 we launched our digital access pilot program to help 100 families in Kentucky and Minnesota get online and get access to the digital resources, telehealth services and virtual communities of support needed to help reduce isolation and get the best quality of care possible.

Population(s) Served
Children and youth

Since 2001, Child Neurology Foundation has awarded over $4.1 million dollars to the research endeavors of over 70 young investigators, aimed at identifying treatments and cures for pediatric neurologic diseases. Read more about each grant on its respective page.

PERF Elterman Research Grant: A $100,000 grant of $50,000 per year for two years to support clinical or basic science research by a child neurologist.
PERF Shields Research Grant: A $100,000 grant of $50,000 per year for two years to support translational or clinical research by a child neurologist.

The Child Neurology Foundation announces the availability of (1) one summer clinical research scholarship for a first- or second-year U.S. or Canadian medical student who has an interest in training as a child neurologist.

The award will be made for clinical research focused in the field of neurodevelopmental disabilities in children to be conducted under the direction of a child neurology/NDD subspecialist during the summer break. Selected applicant will receive a $3,500 scholarship to support his or her research project.

Population(s) Served
Children and youth

The Child Neurology Foundation’s (CNF) Board of Directors identified Management of Disruptive and Harmful Behavior in Epilepsy and Autism Spectrum Disorder as the focus of its 2019 education initiative. Due to the nature of need, we have continued to add our behavioral support and education resources over the years.

CNF’s mission to serve as a collaborative center of education and support of children and families living with neurologic conditions ideally situates us to explore the existing chasm between healthcare provider’s ability to offer behavior management support guidance, and families’ desires to have access to the best treatment available for their children.

Population(s) Served
Children and youth

Every year, the Child Neurology Foundation’s (CNF) Board of Directors identifies an important Education Initiative that impacts the entire child neurology community. In 2020, this Education Initiative is Shortening the Diagnostic Odyssey and our board has decided to dedicate two years to this topic.

There are many reasons why Shortening the Diagnostic Odyssey was chosen as our 2020 Education Initiative.

Here are just a few of those reasons:

400 million people suffer from a rare disease globally – that is greater than the population of the US (1).
The average length of time from symptom onset to an accurate diagnosis is of a rare disease is 5 years (2).
80% of rare diseases are caused by a faulty gene (3).
The Child Neurology Foundation believes it is critical to get to a diagnosis sooner so that parents, caregivers, and physicians can begin the process of finding possible treatments and make more informed decisions about next steps in the care of the child.

In the year ahead, CNF will:

Collect data about the journey through diagnosis from families and clinicians.
Hold an educational symposium for clinicians at the Child Neurology Society (CNS) annual meeting.
Create an educational webinar for caregivers and families.
Develop a genetic testing 101 info sheet for caregivers and families
There are many important steps in the process of coming to a diagnosis, and the first step is for caregivers and doctors to collaborate. The Child Neurology Foundation Annual Symposium at the CNS Annual Meeting will include experts who will discuss the best way for families to monitor and communicate symptoms, as well as how child neurologists can best support children and families through the process of testing, assessments, referral to specialists, genetic counseling, and a treatment plan before, during and after diagnosis.

We will also educate child neurologists on the tools available to accelerate diagnosis timelines, as well as resources to learn more about rare diseases, treatment guidelines and appropriate referrals.

As part of our caregiver education, we will help families to have a more complete understanding of things like: the different pieces that go into receiving a diagnosis; what genetic testing means and does not mean; questions to ask their physician about the diagnostic process; and how to interpret answers.

Population(s) Served
Children and youth

Transitioning from the pediatric to adult health care system should be expected for all patients living with a neurologic condition. However, for some youth and young adults, transitioning from their child neurologist to an adult neurologist can prove challenging. Unfortunately, the necessary supports and services to make the transition successful are often fragmented or missing.

CNF describes the goal of its Transition of Care Program as helping to support youth, families, and child neurology teams in the medical transition from pediatric to adult health care systems. It is one of CNF’s most diverse and comprehensive programs.

To address that goal, CNF offers a wealth of information and resources for both providers (eg, practice guidelines, implementation tools) and youth/families (eg, videos, helpful links, and tools to start the transition conversation with your provider), many of which are developed with the support of our partners who also believe in the importance of transitions within the neurology population.

Additionally, a project advisory committee was formed to plan for implementation of the consensus statement’s common principles under subcommittees that are examining clinical tools, caregiver education, and quality initiatives.

Population(s) Served

This website was created primarily to serve as an educational portal for patients and caregivers. It also allows our advocacy and industry partners to get the word out about their own programs, educational materials, research studies, and many other initiatives aimed at serving the child neurology community.
While there are many viable and trustworthy disease-specific organizations, the Child Neurology Foundation is in a unique position to serve the overarching needs of all members of the community. This website serves as a home within the child neurology community where members can be certain that the information they receive is credible, as all content is vetted by child neurologists.

Thanks to support from our numerous volunteer child neurologists, we have been updating our Disorder Directory to allow visitors to learn from experts with disease-specific articles written for caregivers by leading child neurologists. Accompanied by stories from families living with the same disorders as well as trusted resources, this growing directory serves as a starting point for caregivers seeking direction and guidance related to their child’s unique situation.

CNF has also developed a Respite Care Notebook–a communication tool for caregivers to use with respite care providers. The Notebook includes medical and condition-specific information, but with a “person-first” feel – leading with the child’s strengths, likes and dislikes. The Notebook is available as a downloadable file on the CNF website.

Population(s) Served
Children and youth

Peer Support offers families a free connection with an experienced, compassionate Peer Support Specialist. Our program was created so that no parent or caregiver in the child neurology community ever walks alone.

A Peer Support Specialist helps children and families living with a neurologic condition from diagnosis, treatment, and beyond. Along with relational support, CNF Peer Support Specialists empower families by sharing information and helpful resources.

Population(s) Served
Children and youth

In the many years that CNF has been working in the child neurology community, one of the main issues that we hear time and again, is that there must be a better way for patients and physicians to connect with each other and make better use of the short time they have together during visits. Parents are often stressed and looking for answers to a long list of questions. Physicians have limited time with each patient and might be trying to protect patients and families from negative or discouraging information. Caregivers, patients, and physicians can have different goals for care, and all this combined leads to frustration.

In 2018, CNF began working with Digital Health Solutions to start addressing this issue. We have an opportunity to use efficient and innovative technology to facilitate communication between patients, care givers, and providers. This is where CHICA comes in.

What is CHICA?

CHICA stands for Child Health Improvement through Computer Automation. It’s a web-based clinical decision support system that works with a physician’s current Electronic Health Record System to help coordinate patient visits. When the patient enters the waiting room, they fill out a normal digital intake form, but CHICA asks additional questions that will then be put into an algorithm. Based on the patient and caregiver responses, the algorithm then populates questions and prompts on the provider’s end, so that both caregiver and provider are on the same page from the moment the patient enters the doctor’s office. CHICA also suggests patient educational handouts based on vetted clinical guidelines and measures. This system provides an efficient and minimally invasive way to prompt physicians about evidence-based processes specifically tailored to each patient’s needs.

In 2018, with the support of Greenwich Biosciences, DHS and CNF put CHICA to the test in child neurology by creating a CHICA-SUDEP module. SUDEP is Sudden Unexpected Death in Epilepsy. When we surveyed families, we learned that, “a majority of families wanted to discuss their child’s risk of SUDEP with their pediatric neurologists, but instead were more likely to go to a peer or the internet. We learned that historically, providers were less willing to discuss these topics due to their worry of causing increased anxiety for the caregiver,” said Amy Brin, CNF Executive Director/CEO. “Clearly, these were missed opportunities.”

In reality this conversation was only happening 20% of the time. With our 2018 pilot project, we saw in increase from 22% to 50% in just a 6-week period. This type of change is unprecedented in SUDEP.

Now we want to bring the CHICA model to the rest of child neurology.

What is CHICA-CN?

The Child Neurology Foundation and Digital Health Solutions (DHS) are working together over the next three years to build a set of child neurology modules to work with CHICA, called CHICA-CN (Child Health Improvement through Computer Automation System – Child Neurology).

Within the healthcare system, physicians work with evidence-based clinical guidelines that provide them with guidance for how to treat specific issues and conditions. For the sets of clinical guidelines that already exist within child neurology, we will build algorithms that work within CHICA to coordinate visits between families and physicians. In clinical areas where a guideline doesn’t already exist; the expert panel will assess if there is enough supporting literature to create a clinical consensus algorithm to address a gap in care.

Why is CHICA-CN being built?

CHICA has been used in primary care clinics in the Indianapolis area for 15 years and has produced incredibly successful results. Based on these results, and the success that we experienced with the CHICA-SUDEP trial in 2018, we can have an incredible impact on patient care in child neurology. The Child Neurology Foundation is uniquely positioned at the intersection between patients and families, physicians, researchers, and industry partners, to bring these groups together and drive a project like this forward. We like to think of CHICA-CN as the child neurology moonshot. It will truly be a gamechanger in the way that physicians and families collaborate on care for our kids.

Population(s) Served
Children and youth

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.

Total revenue earned to support advocacy efforts

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, People with diseases and illnesses, People with disabilities

Type of Metric

Input - describing resources we use

Direction of Success


Context Notes

Funding to support all advocacy programs, including education and support initiatives, are generated from corporate giving, community and family foundation grants, and individual gifts.

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.

We envision a world in which all children affected by neurologic conditions reach their full potential.

WE ARE CONVENERS: Convening is the name of the game at CNF. We tackle big bold issues for the child neurology community-we know that we’ll be stronger and go farther together. We bring together stakeholders from industry, patient advocacy, and healthcare provider communities to tackle overarching issues that face the entire child neurology community. Our convener model is based off of our Infantile Spasms Action Network (ISAN) that was established in 2016, which has grown to over 26 organizations speaking with one voice to raise awareness for IS. This methodology has the potential to be replicated in other disease areas with CNF as the convener.

WE ARE LISTENERS: We believe in the power of listening and storytelling, and for this reason, many of CNF’s initiatives begin by gathering information from our community. CNF’s Child Health Improvement through Computer Automation system (CHICA)® project in Sudden Unexpected Death in Epilepsy (SUDEP) was born out of the fact that parents wanted to hear about the risk of SUDEP from their health care provider. When we asked child neurologists, less than 10% reported engaging in this conversation. It’s because we listened to our community, that we were driven to move forward on this issue. This is how CNF approaches everything that we do. Listen first, plan, then act. Other community needs CNF has heard, and then built multi-faceted, multi-stakeholder, and multi-year initiatives around include: transitions of care, disruptive and harmful behavior management, access to therapies and improved communication between patient/caregivers and medical teams.

WE ARE RESOURCE CREATORS: CNF takes on the complicated, messy issues that affect the entire child neurology community. Our Transitions of Care program provides resources to support families as their child transitions from the pediatric healthcare system to the adult system. But we didn’t create these resources for a specific disease state; we created them so that they were general enough to be applied to all complex conditions. Likewise, our Respite Care Notebook provides a general but detailed walk through all of the information that a caregiver would need to collect to feel confident leaving their child in someone else’s care.

WE ARE SUPPORTERS: CNF knows that navigating the diagnosis, treatment, and management of a child with a neurologic condition can be life changing for a parent or caregiver. The Family Support & Empowerement Program (FSEP) model serves as a front-line, virtual, peer support portal for many undiagnosed or newly diagnosed families. CNF hopes to help other advocacy organizations build healthy programs to, not only support families in their disease communities, but also construct a connected network of accessible, informed peer support providers.

While CNF’s programs ebb and flow over the years, there are certain ways of working that are woven through everything that we do. Like our Core Values, the way that CNF builds and delivers our resources
and programs is a part of our DNA.

Our Core Values guide our intentions, our partnerships, and our programs:

PROFESSIONALISM - We treat others as they would want to be treated. We are collegial and respectful in our professional relationships. We are dedicated to expanding our knowledge, being innovative, and understanding the perspectives of others. We honor and respect difference and diversity in all its forms. We strive to exhibit excellence in our work.

INTEGRITY - We are accountable for our commitments and our actions. We are committed to ensuring the interests of the children and families we serve come first. We promote honesty and transparency in our relationships with each other and our collaborators.

COLLABORATION - We work humbly, to identify and understand the urgencies and challenges facing our shared community; we know that they cannot be overcome alone. Whenever possible, we earnestly collaborate on the actions, programs, and initiatives we engage. We want to go farther, so we go together.

STEWARDSHIP - We are committed to being good listeners and to act in responsive service to the needs of the child neurology community. We are respectful stewards of the relationships and stories shared with us. We are empathetic, compassionate, and positive.

• We've effectively partnered with disease-specific organizations, clinicians, and other organizations in the industry the annual Infantile Spasms Awareness Week, December 1-7 and convene the Infantile Spasms Action Network (ISAN), comprising over 30 national and international organizations.
• As a true convener, we've been able to nurture existing partnerships with advocacy organizations and industry, as well as collaborate to enhance program implementation. Through CNF's collaborative, multi-stakeholder framework, various community support efforts are offered including patient/caregiver education programming, clinical tools, resource navigation and a peer support virtual network. CNF interfaces with the larger community via community events & exhibitions, website, social media, webinars and collective awareness campaigns.
• We've developed an array of educational materials to share with advocacy and industry partners to generate stronger outcomes for children/families. We respond to with educational resources and materials as needs shift. Due to overwhelming need during the COVID-19 pandemic, CNF quickly shifted to develop support and education materials specifically for the child neurology community in March 2020.
• We have successfully sold out the Child Neurology Society (CNS) provider, family, advocacy CME symposium four years in a row.
• Provided $4 million in research grants to over 45 young investigators to advance research in child neurology, aimed at identifying treatments and cures for pediatric diseases.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Through educational programming, advocacy work, and technological innovation, we serve the 1 in 5 children and families living with a neurologic condition in the United States. We also serve the 2,500 child neurologists around the US by providing education and funding in the form of grants and scholarships.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Based on our DEI audit and the feedback we received in our annual needs assessment survey, we have been working to identify new partners and organizations to help us reach the digitally disconnected members of our community and help get them online, so they can access the virtual tools, resources and communities of support that they are missing by not being able to get online. This digital access program facilitated through healthcare providers in the communities we serve also helps us connect with a more socioeconomically diverse cross-section of our community.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    It's a journey. We are early on, but these fundamental insights have driven a more patient centric approach to our program development and the ways in which we communicate new resources and educational materials to our community. Over time, we hope to develop a community advisory board made up of the people we serve to help us better serve them and shift the power balance to them.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,



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


Connect with nonprofit leaders


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Connect with nonprofit leaders


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

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Board of directors
as of 09/30/2021
SOURCE: Self-reported by organization
Board chair

Dr. Scott Pomeroy

Boston Children's Hospital

Term: 2019 - 2021

W. Donald Shields


John Hutchins

American Academy of Neurology

Sue Yudovin


Roger Larson

Child Neurology Society

Amy Brin

Child Neurology Foundation

Shaun Hussain


Scott Pomeroy

Boston Children's Hospital

Sandra Cushner-Weinstein

Children's National Medical Center

Tom Langan

Buffalo Children's Hospital

Stephen Peters

Parent Representative

Mary Zupanc

Children's Hospital Orange County

Johnathan Mink

University of Rochester

Julie Gilbert


Anup Patel

Nationwide Children's Hospital

Phillip Pearl

Boston Children's Hospital

Ann Tilton

Children's Hospital of New Orleans

Donald Pearl

Scott Perry

Cook Children's Medical Center

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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 7/30/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.


No data

The organization's co-leader identifies as:

No data

Race & ethnicity

No data

Gender identity


Sexual orientation

No data


No data

Equity strategies

Last updated: 07/30/2021

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

  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • 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.