Message from the Board

Hello, I would like to introduce myself. My name is Sharon Lagas and I am the President of the Alport Syndrome Foundation. This Foundation has been a dream of mine since 2004 when I lost my brother to the disease, discovered I was a carrier, and found out my two sons and two nieces had Alport Syndrome. Finding partners to work with me on this endeavor was the catalyst that was needed to make this a reality. I am very proud of what we have accomplished since we launched ASF in 2007. It has been an amazing experience for me working with the other board members and volunteers, and I believe we have been able to accomplish so much because each of us is totally committed to the mission of the Foundation.

Developing this foundation has allowed us to form an Alport Community. It has allowed us to move from being a patient to being an advocate. From being one voice to an entire community. From feeling alone and isolated to being part of a group with similar issues and concerns. From wondering how to get the best medical care for our families to having that care come to us.

We are making a difference in the lives of Alport Syndrome patients and families and I challenge others in the Alport community to get involved with the ASF. There is only one requirement – your desire to make a difference in the lives of patients and families dealing with Alport Syndrome. I look forward to the day that all of our children will not have to worry about the effects of this disease and I am committed to accomplishing this through the Foundation.

Thank you,

Sharon Lagas