Alport Syndrome Foundation Inc
Alport Syndrome Foundation Inc
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About this organization
Mission
Our mission is to improve the lives of those affected by Alport syndrome through education, empowerment, advocacy, and research. Our vision is to conquer Alport syndrome, a rare genetic disease that causes kidney failure, hearing loss and vision problems.
About
Competitive research funding program. The ASF research program is funded in large part by the annual campaign for healthy kidneys as well as other fundraising events. ASF has developed strategic alliances and international partnerships to increase the resources applied to finding novel treatments and a cure. Since 2010, ASF and its partners have provided more than 2 million dollars on research projects for Alport syndrome that have focused on correcting the genetic defect in cells derived from patients, basic science on the structures of the kidney that affect the basement membrane and disease progression, protein replacement therapy, microrna therapy, antibody therapy, and drug repurposing.
Interesting data from their 2020 990 filing
The filing reveals the mission of the non-profit as “The foundation was created to educate and support patients and families that have been affected by this genetic kidney disease with a goal of funding research, to find more effective treatment protocols and to ultimately find a cure.”.
When detailing its functions, they were listed as: “To improve the lives of those affected by alport syndrome through education, empowerment, advocacy, and funding research. the foundations vision is to make alport syndrome a treatable disease and find a cure.”.
- According to the law, the state where the non-profit operates has been reported as AZ.
- The filing specifies that the non-profit's address in 2020 was 1608 E Briarwood Terrace, Phoenix, AZ, 85048.
- As of 2020, the non-profit's form shows they have a total of 1 employees.
- Does not operate a hospital.
- Does not operate a school.
- Does not collect art.
- Does not provide credit counseling.
- Has foreign activities.
- Is not a donor advised fund.
- Is not a private foundation.
- Expenses are between $250,000 and $500,000.
- Revenue is between $500,000 and $1,000,000+.
- Revenue less expenses is $113,221.
- The CEO compensation scheme within the organization is based on a review and endorsement process by a neutral entity.
- The organization has a written policy that describes how long it will retain documents.
- The organization has 8 independent voting members.
- The organization was formed in 2007.
- The organization has a written policy that addresses conflicts of interest.
- The organization is required to file Schedule B.
- The organization is required to file Schedule O.
- The organization pays $127,674 in salary, compensation, and benefits to its employees.
- The organization pays $24,633 in fundraising expenses.
- The organization provides Form 990 to its governing body.
- The organization has minutes of its meetings.
- The organization has a written whistleblower policy.
- The organization has fundraising events.
- The organization has grants to organizations.
- The organization's financial statements were reviewed by an accountant.
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