The Brain Recovery Project

aka The Brain Recovery Project: Childhood Epilepsy Surgery Foundation   |   Los Angeles, CA   |  www.brainrecoveryproject.org

Mission

We help children reach their full potential after surgery where part of the brain is removed, disconnected, destroyed, or stimulated to stop seizures by inspiring and funding research, providing emotional and financial support, and empowering families with research-based information and programs.

Ruling year info

2011

CEO

Monika Jones JD

Main address

969 Colorado Blvd Suite 101

Los Angeles, CA 90041 USA

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Formerly known as

The Brain Recovery Project

EIN

45-2571898

NTEE code info

Alliance/Advocacy Organizations (G01)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The community of children who need, or have had, epilepsy surgery are grossly underserved and poorly understood: Early in the epilepsy surgery journey, there are long delays to appropriate evaluation to see if the child is a candidate for surgery. There is a poor understanding of functional outcomes, and how to improve them, after brain surgery to stop seizures in childhood - especially large surgeries where up to half the brain is removed or disconnected. This is one reason so many neurologists hesitate to recommend it, and why many parents hesitate to consider it - often to the long-term detriment of the child. Because epilepsy surgeries are as individual as the child who has them, and still relatively rare, parents are left to navigate the chronic maze of aftercare in their hometown, often with health care and educational partners with little or no experience in post-epilepsy surgery medical, educational, behavioral, rehabilitation, and life care issues.

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?

Education and Resources

Our website, conferences, and publications provide parents and providers with the information they need to help children after epilepsy surgery.

Population(s) Served
Children and youth
People with disabilities

We drive new research to better understand functional outcomes after epilepsy surgery in childhood.

Population(s) Served
Children and youth
People with disabilities

We provide a scholarship to parents who needs funds to travel to an epilepsy surgery facility more than 50 miles from home to have a surgical evaluation. Additionally, our Community of Care grant provides assistance for distance learning and telehealth during the COVID-19 pandemic. Finally, we provide emergency financial assistance to families impacted by the COVID-19 pandemic.

Population(s) Served
Families

Where we work

Awards

R13 2014

National Institutes of Neurological Disorders and Stroke

Eugene Washington Engagement Award 2019

Patient Centered Outcomes Research Institute

Research Meeting 2019

American Epilepsy Society

Affiliations & memberships

Global Genes Rare Foundation Alliance 2016

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.

Stop the delay to surgical evaluation;

Fund research to understand and improve functional (cognitive, education, motor, behavior etc) outcomes after pediatric epilepsy surgery;

Educate stakeholders (e.g. parents, clinicians, educators) about functional outcomes after pediatric epilepsy surgery, and how to improve them, by giving them the information needed to help children after epilepsy surgery throughout the lifespan across all functional domains;

Provide financial assistance to families impacted by epilepsy surgery.

Prepare knowledge translation summaries functional outcomes and therapy interventions; Work with parent advisory board and review social media posts to understand stakeholders’ biggest concerns, misunderstandings, and lack of knowledge re functional outcomes and interventions; Identify gaps between research and real life situations, parent needs, etc; Develop annual stakeholder survey; Develop rehabilitation programs and camps based on existing research; Advance the body of research on functional outcomes and intervention strategies after various pediatric epilepsy surgeries; assemble scientific advisory board to assist with identifying research focus; assemble parent advisory board to assist with identifying research focus; Identify and initiate new descriptive research on outcomes and interventions; Fund a multi-disciplinary research fellowship; Advance a formal primary stakeholder pediatric epilepsy surgery education program; Develop learning modules which address the ILAE drug-resistant failure standard, all the epilepsy surgeries, including descriptions, pre-testing, risks, acute recovery, functional outcomes, etc.; Create and promote learning stories that show how epilepsy surgery has stopped a child’s epilepsy. Include stories of multiple procedures or unsuccessful seizure outcomes; Regular updates on website, guest blogs, newsletter, email, etc. re new research re efficacy of pediatric epilepsy surgeries; Marketing campaign to stakeholders to increase awareness of our programs/services; Advance an informal primary stakeholder pediatric epilepsy surgery education program; Maintain a robust social media presence to guide parents to the website when queries are made in social media groups; Regular social media posts, shares, etc. re relevant epilepsy surgery articles, papers, etc.; Guest blogs re various epilepsy surgery considerations; Advance a relationship-building campaign with neurosurgeons and neurologists; Identify the top 10-12 pediatric epilepsy surgery facilities in the U.S.; Understand the neurosurgeon’s and neurologist’s pain points (e.g. predicting the future/crystal ball effect); Work with identified facilities to help them understand what we do and how to share our information.

With a professional staff, consultants, and board of directors of pediatric epilepsy surgery directly impacted by pediatric epilepsy surgery, a 20-member community advisory council, an 11-member scientific advisory board, as well as robust financial support from the community we serve, the organization is poised to meet its goals.

To date, the organization has funded over $800,000 in research to understand functional outcomes, and how to improve them, after epilepsy surgery - primarily hemispherectomy, a procedure where half the brain is removed or disconnected to stop drug-resistant seizures;

We have launched the world's first registry to track the developmental trajectory after pediatric epilepsy surgery;

We hold biennial family and professional conferences to educate parents on how to help their child and provide peer support, and to align professionals on the state of research on functional outcomes after surgery. Dozens of conference sessions have been video recorded for parents to view if they are unable to attend a conference;

We have populated our website with robust, deep information about outcomes after various surgeries;

We have provided financial assistance to families who must travel more than 50 miles from home for a surgical evaluation for their child as well those in need of financial aid during the COVID19 pandemic.

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 shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    We serve the community of children anywhere on the epilepsy surgery journey, primarily through their parents and caregivers.

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

    Electronic surveys (by email, tablet, etc.), Case management notes, 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?

    Our 2020-2025 strategic plan is informed by our community survey. One example is we are now planning a summit to establish clinical guidelines because our families want guidance there.

  • 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?

    Feedback has allowed us to step back and assess programmatic success. More importantly, it guides our strategic planning by shifting our decisionmaking even more strongly toward the needs of our community.

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

    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 act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

The Brain Recovery Project
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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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  • 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.

The Brain Recovery Project

Board of directors
as of 4/7/2021
SOURCE: Self-reported by organization
Board chair

Luke Shepard

Tempus Labs

Term: 2017 - 2022

Luke Shepard

e-Spark Learning

Gary Mathern

UCLA/Mattel Children's Hospital

Matt Flesch

Horizon Pharmaceuticals

Bradley Jones

Bella Baby So Cal

Kevin O'Connor

Franklin Templeton Investments

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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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? No

Organizational demographics

SOURCE: Self-reported; last updated 04/02/2021

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

Leadership

The organization's leader identifies as:

Race & ethnicity
Hispanic/Latino/Latina/Latinx
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 04/02/2021

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

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We have community representation at the board level, either on the board itself or through a community advisory board.