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B Brave Foundation

Building Bridges to a Brighter Future

Cleveland, OH   |  www.bbravefoundation.org

Mission

The B Brave Foundation is committed to improving the lives of children with rare incurable neurological disorders. We accomplish our mission through our direct efforts with key stakeholders: * We advocate for affected children, and the best quality of life * We support families to ease financial stress, cope with incredible emotional challenges, and enhance the quality and the quantity of time they have with their children. *We work closely with healthcare providers, striving to find tools and tactics that reduce unnecessary suffering and allow them to face the unusual challenge of incurable pediatric illness with grace and honesty.

Ruling year info

2017

Executive Director

Sara Scaparotti

President

Patrick Hopkins

Main address

PO Box 35294

Cleveland, OH 44135 USA

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EIN

82-2057232

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

Most pediatric degenerative neurological disorders are life-threatening and incurable. Many, like GM-1, Tay-Sachs, and Sandhoff disease are genetic and fatal. They are also progressive, meaning that after prognosis, the effects of the disease become more pronounced until it overwhelms the child. Because the brain controls the whole body, these diseases often affect many different organs and bodily systems, making care for these children a complex challenge involving many medical specialists and extensive care requirements. Treatments typically improve symptoms, relieve pain and increase mobility. Until cures are found, the best outcome is to provide the best quality of life and comfort available for the patient and family.

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?

Family Support

B Brave Foundation seeks to support families with children affected by GM-1 (infantile gangliosidosis), and other rare fatal neurological disorders, through care planning, counseling, coordinating caregivers, and assistance with medical device acquisition.

Population(s) Served
People with diseases and illnesses

Where we work

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.

B Brave improves the lives of children and families affected by rare, incurable neurological disorders. We strive to enhance the care experience for patients, families, and healthcare providers, focusing on maximizing the time families have together and finding ways to reduce stress. Our mission involves four key stakeholders:

-Affected children, for whom we advocate through developing a care model that minimizes unnecessary suffering. We accomplish this by partnering with healthcare professionals, caregivers, and families to maximize the time families have together by optimizing care.

-Parents and families, who receive direct financial aid, emotional support, guidance, and a community that has traveled their same journey. This not only eases financial challenges but ideally provides a path toward hope and healing.

-Healthcare professionals, with whom B Brave partners to make caring for affected children as compassionate and effective as possible. We seek to bridge the gaps in our fragmented healthcare system, which is not designed to care for these medically complex children.

-Supporters – the extended network of family and friends who can make all the difference in helping parents get through this challenge. For this group, we provide guidance, practical tips, and advice on how they can best help those they love.

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

    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 understand people's needs and how we can help them achieve their goals

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

  • What challenges does the organization face when collecting feedback?

Financials

B Brave Foundation
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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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Connect with nonprofit leaders

Subscribe

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.

B Brave Foundation

Board of directors
as of 01/11/2023
SOURCE: Self-reported by organization
Board chair

Sam Scaparotti

Scott Brown

Susie Brown

Sam Scaparotti

Sara Scaparotti

Patrick Hopkins

Stephanie Jerse

Keith Richardson

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? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • 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 2/11/2021

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

Leadership

No data

The organization's co-leader identifies as:

No data

Race & ethnicity

No data

Gender identity

Transgender Identity

Sexual orientation

No data

Disability