Dear ASF Community,
I am honored to be the Chair of the Board of Alport Syndrome Foundation. I’m grateful to and inspired by our Co-Founder and Past President, Sharon Lagas, and look forward to my ongoing work with her as we focus on the continued growth and progress of ASF.
My efforts for our organization are personally meaningful. I became involved because my 17-year-old daughter, Lucy, has Alport syndrome. Lucy joined me in Washington D.C. March 2019 to represent Alport Syndrome Foundation at the National Kidney Patient Summit. I’m proud that she is already empowering herself and helping others through advocacy. I work alongside other volunteers who walk in my shoes and understand the value of our mission. I appreciate all the time, skills, experience and dedication that our board members and other volunteers contribute to sustain ASF.
My hope is that we all see ourselves as the future of ASF. The work is better and more easily accomplished with more hands. We need volunteers to get involved with Alport awareness campaigns; fundraise through Team ASF to sustain patient support programs; participate in advisory groups; become patient ambassadors; attend our Alport Connect Together family meetings, and contribute skills where they can. Do you have skills that you can contribute: photography, videography, writing, fundraising, event-planning, social media savvy? Alport syndrome is genetically rare, but we are more powerful together.
Thank you for participating in the Alport Syndrome Foundation Community.
To get involved, please contact us.