CHAMP1 Research Foundation

Making The Impossible Happen

Spring Hill, FL   |  www.champ1foundation.org

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 info

2018

Treasurer

Carolyn D'Angelo

Main address

1367 Whitewood Avenue

Spring Hill, FL 34609 USA

Show more contact info

EIN

83-0516268

NTEE code info

Fund Raising and/or Fund Distribution (G12)

IRS filing requirement

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

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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

CHAMP1 Registry

Collaborating with BACKPACK HEALTH to successfully collect data for all CHAMP1 related disorders.

Population(s) Served
People with intellectual disabilities

Raising money to supply prospective researchers the fund to further science and advance CHAMP1 research for treatment and ultimately a cure.

Population(s) Served
Adults
People with intellectual disabilities

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of grants and research funding awarded to the institution

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

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.

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 100 families strong and growing and will stop and nothing to reach our goal.

We have animals models being made, cell lines and resources for the scientific community. We are raising funds to support research and our families are connected and united through the CHAMP1 Research Foundation.

Financials

CHAMP1 Research 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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CHAMP1 Research Foundation

Board of directors
as of 7/6/2021
SOURCE: Self-reported by organization
Board chair

Melanie Labon

CHAMP1 Research Foundation

Term: 2020 - 2024

Organizational demographics

SOURCE: Self-reported; last updated 07/06/2021

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
White/Caucasian/European
Gender identity
Female
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability