Message From 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 in this first year. It has been an amazing experience for me working with the other board members 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 was so important to me because I felt it allowed me to go 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 my family to having that care come to us.

I know we can make a difference in the lives of Alport Syndrome patients and families. I challenge others in the Alport community to get involved with the Foundation. 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