Basic Organization Information
Alport Syndrome Foundation Inc
- Also Known As:
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ASF
- Physical Address:
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Phoenix, AZ
85048 9414
- EIN:
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20-8237159
- Web URL:
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www.alportsyndrome.org
- NTEE Category:
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G Disease, Disorders, Medical Disciplines
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G44 Kidney
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G Disease, Disorders, Medical Disciplines
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G20 Birth Defects
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H Medical Research
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H80 Specifically Named Diseases Research
- Year Founded:
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2007
- Ruling Year:
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2007
- How This Organization Is Funded:
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Annual Campaign - $80,000
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Various 5K Walk/Runs - $75,000
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Individual donations
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Mission Statement
Our mission is to educate and support patients and families that have been affected by Alport Syndrome, genetic kidney disease, and fund research to find more effective treatment protocols and a cure.
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Impact Statement
- Awarded research funding grants to Dr. Laura Perin, Children's Hospital of Los Angeles, CA for Amniotic Fluid Stem Cell research and Dr. Clifford Kashtan, University of Minnesota Medical Foundation, for the Alport Syndrome Treatments and Outcomes Registry.
- Partially funded establishment of a web based database of all mutations in Alport Syndrome and related genes, developed by Dr. Judy Savige. This database will also include clinical data so that the laboratories can predict clinical outcome. The database will be linked to websites at UVSC and NCBI and all access will be free.
- Sponsorship of the International Symposium for Physicians, Researchers and Families was held in conjunction with the 15th Congress of the International Pediatric Nephrology Association in August 2010. This was attended by over 600 physicians, researchers and families.
- Sponsor a 2 day Family Conference at the University of Minnesota, providing up to date information on medical research and allowing families to connect to others.
- Continued growth of our online forum and increased awareness of the Foundation to over 50 countries worldwide and increased particpation in the US with over 1300 participants. Use of social media including Facebook and Twitter to increase awareness.
- Yearly participation in American Society of Nephrology Renal Week distributing educational and informational brochures to the medical community increasing awareness in the medical and research communities.
- Promotion of ASTOR, the Alport Syndrome Treatment and Outcomes Registry at the University of Minnesota.
- Upgrade of website and data base for more effective awareness and communication. Developed the video, "The Alport Syndrome Story" and posted on website.
- Development of a volunteer network to enhance programs.
- Development of a long range strategic plan.
- Continuing to communicate through monthly e-newsletters.
- Several successful 5K fundraising events.
Revenue and Expenses
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Financial Statements
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Chief Executive
Sharon Lagas
Term:
Since
Jan
2007
Chief Executive Profile:
Sharon has a B.S. degree in Geological Sciences from Dickinson College in Carlisle, PA and complete graduate studies at the University of California, Long Beach. She worked in environmental consulting for over 15 years, in California and Arizona and is currently serving on the State of Arizona Water Quality Appeals Board. Sharon also has 10 years of experience as a volunteer leader serving on a non-profit board in various officer positions.
Officers for Fiscal Year
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Highest Paid Employees & Their Compensation
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Program:
International Symposium
- Budget:
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$100,000
- Category:
-
- Population Served:
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Adults
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Children and Youth (infants - 19 years.)
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Female Adults
Program Description:
- Provide a new opportunity to increase awareness of Alport Syndrome
- Provide physicians, researchers and families the most recent information on the disease, its treatment and diagnosis
Program Long-Term Success:
Program Short-Term Success:
Program Success Monitored by:
Program Success Examples:
Program:
Research Funding Grants
- Budget:
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$140,000
- Category:
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Medical Research
- Population Served:
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General Public/Unspecified
Program Description:
Awarded research funding grants to Dr. Laura Perin, Children's Hospital of Los Angeles for Amniotic Fluid Stem Cells & Alport Syndrome Study and Dr. Clifford Kashtan, University of Minnesota Medical Foundation for the Alport Syndrome Treatments and Outcomes Registry.
Program Long-Term Success:
Research findings to be published in the Journal of American Nephrology.
Obtaining critical data to be able to move to clinical trials.
Program Short-Term Success:
Presented at American Society of Nephrology Kidney Week. Increasing participation in ASTOR registry.
Program Success Monitored by:
ASF Board of Directors
Program Success Examples:
Funding Needs
- Sponsorship for the Alport Syndrome Family Conference at the University of Minnesota in July 2012.
- Support of research funding grants.
- Update and reprint educational brochures, including a Spanish translation
Volunteer Needs
See website for ongoing and updated information or email Foundation info@alportsyndrome.org
Request for In-Kind Contributions