CHAMP1 Research Foundation
Making the impossible happen
Programs and 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?
CHAMP1 Registry
Collaborating with Rare-X to successfully collect data for all CHAMP1 related disorders.
Research grants
Raising money to supply prospective researchers the fund to further science and advance CHAMP1 research for treatment and ultimately a cure.
Where we work
External reviews

Our results
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
Reports and documents
Download strategic planLearn 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?
Our goal to raise enough money to support research to find therapeutics for CHAMP1 and ultimately a cure.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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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.
CHAMP1 Research Foundation
Board of directorsas of 04/17/2023
Jeff D'Angelo
CHAMP1 Research Foundation
Term: 2018 -
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
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No data