Disease, Disorders, Medical Disciplines

CHAMP1 Research Foundation

Making The Impossible Happen

Spring Hill, FL

Mission

Our mission is to improve the lives of those affected by CHAMP1 disorders through clinical research, effective treatments, public awareness, early detection, family support and patient advocacy.

Ruling Year

2018

Treasurer

Carolyn D'Angelo

Main Address

1367 Whitewood Avenue

Spring Hill, FL 34609 USA

Keywords

Research, Advocacy

EIN

83-0516268

 Number

1306287362

Cause Area (NTEE Code)

Fund Raising and/or Fund Distribution (G12)

IRS Filing Requirement

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

Social Media

Programs + Results

What we aim to solve

CHAMP1 is a foundation of parents with children that have a ultra rare disease due to a mutation to there CHAMP1 gene. This was discovered in 2015 and there is very little information or research conducted. a population of the children have seizures, autistic features, severe disabilities among many other health concerns. The money raised will do to support research for treatment options in hopes to give children with this disease a better and more full life. The problem standing in our way is scientific research can cost millions of dollars, we need resources to fuel our mission.

Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

CHAMP1 Registry

Research grants

Where we work

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of funding dollars secured for demonstration projects or pilots

TOTALS BY YEAR
Population(s) served

People with disabilities,

People with intellectual disabilities

Related program

Research grants

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context notes

Through various fundraising efforts and donations, Since June of 2018 we have raised 20k to put towards research for treatment options. We are currently awaiting results of on going research.

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

Our goal to raise enough money to support research to find therapeutics for CHAMP1 and ultimately a cure.

To coordinate and collaborate with the global scientific community to understand the function of the CHAMP1 gene in order to develop effective treatments and a cure for CHAMP1 disorders. To increase the medical community and public awareness of the complexity and potential severity of CHAMP1 disorders. To provide educational and emotional support for those affected by CHAMP1 disorders.

We are a foundation made of relentless parents that will not stop until we understand the science of CHAMP1 and pathways of treatment to help our community. We are 50 families strong and growing and will stop and nothing to reach our goal.

There is already progress being made, animal models are in the works and some basic research is being conducted. A major milestone would be to identify drug able targets, utilize screening databases, clinical trials ect. Our next step would to be able to fund a study to search for treatable targets.

We have animals models being made, we are raising funds, our families are connected and united through the CHAMP1 Research Foundation.

External Reviews

Financials

CHAMP1 Research Foundation

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Operations

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

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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

Not Applicable

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Not Applicable

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Not Applicable

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Not Applicable

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

Not Applicable

Organizational Demographics

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

SOURCE: Self-reported by organization

Gender

Sexual Orientation

We do not display sexual orientation information for organizations with fewer than 15 staff.

Disability

We do not display disability information for organizations with fewer than 15 staff.

Diversity Strategies

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We track retention of staff, board, and volunteers across demographic categories
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We track income levels of staff, senior staff, and board across demographic categories
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We track the age of staff, senior staff, and board
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We track the diversity of vendors (e.g., consultants, professional service firms)
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We have a diversity committee in place
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We have a diversity manager in place
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We have a diversity plan
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We use other methods to support diversity