CNF Strategic Plan 2022-2024

An engaged child neurology community.
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No child or family with a neurologic condition feels alone.
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Quality, equitable, family-centric care and innovative treatments.
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A healthy, sustainable, and credible organization.
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The mission of the Child Neurology Foundation is to serve as a collaborative center of education, resources, and support for children and their families living with neurologic conditions and facilitate connection with medical professionals who care for them. To ensure our strategic direction is aligning with our mission, the CNF Board of Directors regularly completes a process to develop a strategic plan and execute impactful programs for the child neurology community. We begin by gathering data from our community through surveys, interviews, and focus groups. The data is then translated into visionary goals that will drive change.

While we are bold in our goals, we simultaneously set them while holding a mirror to ourselves, as we are committed to ensuring our goals are within our organization’s strengths and capacity. If we are going to say we are going to do something, then we better be able to do it. This document gives an overview of the goals we are setting out for the next three years, as well as the initial deliverables we will begin to employ in the first year. We share this information standing in our values of professionalism, integrity, collaboration and stewardship, so that we are transparent with our full community and hold ourselves accountable for making an impact.

We strive as an organization to work collaboratively and be a good steward of our relationships, so our doors, Zoom lines and inboxes are always open for feedback, insights, or synergistic partnerships related to the strategic outline below.

In hope and with passion,

CNF Board of Directors and staff

Goal 1:

An engaged child neurology community activated to make impactful change together. Rising tides lifts all boats.

STRATEGY: Facilitate multi-stakeholder collaboration that leads to the development of solutions that helps improve the quality of life for children and families living with neurologic conditions.

Tactic A

Utilize robust data-gathering methods to identify emerging issues in our community and highlight the interconnectedness between patients, families & health care professionals needed to solve them.

Examples of deliverables in 2022

Annual national needs assessment
Patient Experience Bureau (PEB)

Tactic B

Convene multi-stakeholder conversations to help the child neurology community make meaning of the data-gathered and help advance collaborative solutions.

Examples of deliverables in 2022

Tactic C

Amplify the voices of the innovative leaders, best-in-class organizations and collaborative efforts that exemplify CNF’s mission through our marketing and communications.

Examples of deliverables in 2022

Measurable impact on audience growth, retention and engagement metrics

Goal 2:

A today in which no child and family living with a neurologic condition feels alone. Instead they feel heard. They are seen. They know their daily journey is supported and respected. They are empowered, connected and educated.

STRATEGY: Serve as an indispensable connector of education, resources, and support for children and families living with neurologic conditions

Tactic A

Provide person-first, navigational connections for patients, caregivers, healthcare professionals and leaders within the child neurology community.

Examples of deliverables in 2022

Resource navigation via SDOH Unite Us platform
Digital access program
Disorder Directory

Tactic B

Deliver best-in-class peer support and resource navigation assistance to children and their families living with a neurologic condition.

Examples of deliverables in 2022

Virtual direct peer support services
Peer support specialist training

Tactic C

Educate patients, caregivers, healthcare professionals and leaders on topics that highlight the interconnectedness of the patient/ family and health care professional relationship within the child neurology community.

Examples of deliverables in 2022

Four targeted education initiatives: Clinical Trials, Shortening the Diagnostic Odyssey in Pediatric Epilepsy, Care Coordination, SUDEP Awareness and Behavior Change Project

Goal 3:

A tomorrow in which all children and families living with a neurologic condition have access to quality, equitable, family-centric care and innovative treatments.

STRATEGY: Promote and fund innovation that shapes the future of child neurology care.

Tactic A

Provide funding for innovative projects that accelerate impactful change at the point of care.

Examples of deliverables in 2022

The Innovation Fund
CHICA-CN

Tactic B

Provide funding to early investigators in basic and clinical translational research to help drive new treatment options.

Examples of deliverables in 2022

Early investigator research grants (like the PERF Elterman & PERF Shields research grants)
Medical student summer scholarships
Expand research funding mechanisms

Tactic C

Engage in federal, state and community advocacy efforts directly related to CNF’s mission and strategic priorities.

Examples of deliverables in 2022

Advocacy efforts at the federal, state, community and individual level
Leverage and coordinate Patient Experience Bureau, CAB, other convened groups to amplify advocacy efforts

Goal 4:

A healthy, sustainable, and credible organization
through solid financial and governance systems, long-term security goals, and values-based human resources policies.

STRATEGY: Execute exceptional governance, operational and financial management.

Tactic A

Develop efficient financial and governance systems in order to mitigate risk. Routinely communicate with staff, board members, and the public for meaningful transparency.

Examples of deliverables in 2022

Detailed finance, development, and governance requirements to review existing technology
EDI values incorporated into financial decision-making processes

Tactic B

Create long-term security for the foundation.

Examples of deliverables in 2022

Continue building the operating reserve
Three-year multi-scenario business plan
Monthly fundraising goals

Tactic C

Support the CNF team with an approach to HR that embraces and values them as a team and as individuals, through best-in-class benefits, competitive salaries, and clear and transparent communications. Champion the intrinsic value of every person on the team regardless of race, creed, color, religion, gender, gender identity, gender expression, sexual orientation, disability, age, veteran status, marital status, pregnancy or related condition (including breastfeeding), or any other basis protected by law.

Examples of deliverables in 2022

HR best practices (reviewed yearly)
Employee “Pulse Surveys”
Best-in-class benefits

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Goal 1:

An engaged child neurology community activated to make impactful change together. Rising tides lifts all boats.

STRATEGY: Facilitate multi-stakeholder collaboration that leads to the development of solutions that helps improve the quality of life for children and families living with neurologic conditions.

Tactic A

Examples of deliverables in 2022

Tactic B

Examples of deliverables in 2022

Tactic C

Examples of deliverables in 2022

Goal 2:

A today in which no child and family living with a neurologic condition feels alone. Instead they feel heard. They are seen. They know their daily journey is supported and respected. They are empowered, connected and educated.

STRATEGY: Serve as an indispensable connector of education, resources, and support for children and families living with neurologic conditions

Tactic A

Examples of deliverables in 2022

Tactic B

Examples of deliverables in 2022

Tactic C

Examples of deliverables in 2022

Goal 3:

A tomorrow in which all children and families living with a neurologic condition have access to quality, equitable, family-centric care and innovative treatments.

STRATEGY: Promote and fund innovation that shapes the future of child neurology care.

Tactic A

Examples of deliverables in 2022

Tactic B

Examples of deliverables in 2022

Tactic C

Examples of deliverables in 2022

Goal 4:

A healthy, sustainable, and credible organization through solid financial and governance systems, long-term security goals, and values-based human resources policies.

STRATEGY: Execute exceptional governance, operational and financial management.

Tactic A

Examples of deliverables in 2022

Tactic B

Examples of deliverables in 2022

Tactic C

Examples of deliverables in 2022

A healthy, sustainable, and credible organization
through solid financial and governance systems, long-term security goals, and values-based human resources policies.