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 at the age of 38 years old to the effects of this disease and my family was diagnosed with Alport syndrome. We learned that my mother, myself, my two sons, and my brother and his two daughters were affected. I only wanted to connect with others dealing with the same issues for support and resources but there was nothing available at the time.
Finding partners to work with me on this endeavor was the catalyst that was needed to make this a reality. Vint DeGraw, Margaret Blue, Stan Silver and I launched the Alport syndrome Foundation in 2007. Developing this foundation, and working with other patients and families and volunteers, as well as our Medical Advisory Committee, has allowed us to give a voice to the Alport syndrome Community, form a support network, advance research, support the patient registry, sponsor patient and academic meetings and collaborate internationally.
This is an exciting time for the Alport syndrome Foundation. Thanks to tireless volunteers and generous supporters, we have built an organization from the ground up. Together, we have raised over $1 million primarily for research, and helped thousands of patients and families lead better lives.
Yet Alport syndrome remains a rare disease that gets relatively little attention and funding — awareness in the medical and patient community needs to be further strengthened. Research conducted over the last several years gives hope that we may be moving closer to clinical trials for treatments. This forward momentum — in both building awareness and funding research — must be continued to enhance the likelihood of finding effective treatments. ASF aims to help build the critical mass of interest in the medical and patient community and dramatically increase the amount of resources applied to making Alport syndrome a treatable disease.
Your support can help make this happen. I challenge others in the Alport community to get involved — 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. I hope you will join me.
Sharon Lagas, President
You might also be interested in our blog post by Vint DeGraw, Vice President, on Reasons to Hope for the next generation of Alport syndrome patients.