About Alport Syndrome Foundation

The Alport Syndrome Foundation (ASF) is a volunteer-led organization formed in 2007 by families affected by this disease. We are a 501(c)(3) non-profit corporation, but are essentially a group of concerned families and friends that want to make a difference. The Alport Syndrome Foundation has been built on the past efforts of the late Dr. Curtis Atkin of the University of Utah and the Hereditary Nephritis Foundation (HNF). The Alport Syndrome Foundation is also registerd with Guidestar, an organization dedicated to providing information on non-profits.

Our MISSION is to educate and support patients and their families that have been affected by this genetic kidney disease with the goal of funding research to find more effective treatment protocols and a cure for Alport Syndrome.

Our VISION is simple. We want to:

• Centralize information about Alport Syndrome,
  
• Provide communication and support to and between affected patients and families,
  
• Identify medical resources, and
  
• Ultimately accumulate and direct resources to support research to cure Alport Syndrome.
  

We also have a STRATEGIC PLAN that is in place to guide us during this inaugural year and to set a strong foundation for planning our activities for the future. During this first year our focus will be on accomplishing the following goals:

• Establish the Alport Syndrome Foundation (including obtaining 501(c)(3) designation form the Internal Revenue Service, developing bylaws, policies and procedures, an annual budget, and other infrastructure)
• Develop the Alport Syndrome Foundation website and an ongoing plan to review, monitor, and update the website materials.
• Establish a Medical Advisory Committee.
• Establish a patient and family support network and educational materials.
• Develop a fundraising plan.
• Work with the University of Utah to ensure that past genetic research is accessible to future research activities.
• Develop a 5-year Strategic Plan, including development of fundraising goals and volunteer opportunities.