B Brave Foundation
Building Bridges to a Brighter Future
Programs and results
What we aim to solve
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
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.
Where we work
Videos
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
What are the organization's capabilities for doing this?
What have they accomplished so far and what's next?
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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Which of the following feedback practices does your organization routinely carry out?
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What challenges does the organization face when collecting feedback?
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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.
Connect with nonprofit leaders
SubscribeBuild 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 directorsas of 01/11/2023
Sam Scaparotti
Scott Brown
Susie Brown
Sam Scaparotti
Sara Scaparotti
Patrick Hopkins
Stephanie Jerse
Keith Richardson
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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