About the AGSAA
The Aicardi Goutieres Syndrome Advocacy Association (AGSAA) is a global coalition of deeply dedicated parent advocates working alongside clinicians, researchers, and scientists. We are united in our desire to improve the lives of individuals and families living with and yet to be diagnosed with Aicardi-Goutières Syndrome using our learned experience and honoring those before us.
Our Mission: Rescuing Potential
Everything we do reflects a sense of urgency to rescue patient potential and preserve quality of life. We’re focused on accelerating research and providing timely emotional outreach and educational support alongside evolving clinical care recommendations to affected families.
The AGSAA is a 501c3 nonprofit foundation (tax ID 81-2738041). Click here to support this important mission.
Meet the Team
Board
Stephanie Weinberg - President
Megan Reamer - Treasurer
megan.reamer@agsaa.org
Jeana Hacker - Secretary
Devon Cordova - Vice President
devon.cordova@agsaa.org
Directors
Executive Director
Devon Cordova
devon.cordova@agsaa.org
Director of Operations
Patrick Winters
Patrick lives in Raleigh, North Carolina where he begins but never finishes all sorts of projects for his kids and family. A graduate of New York University, Patrick earned an M.S. degree in computer science with a focus in computational biology. Who knew that would be helpful one day?
patrick.winters@agsaa.org
@rare_dadvocate
Marketing Director
Betty Trevino
Betty lives in Austin, Tx with her husband, Guillermo, and sons Sammy and Noah. Noah was diagnosed with AGS type 5 in 2022 just at 5 months of age. Betty graduated from Texas A&M University and practiced Global Product Marketing prior to the diagnosis. She loves spending time with family and making them happy.
betty.trevino@agsaa.org
Finance Director
Ashley Matura
Ashley lives in the suburbs of Philadelphia, PA with her son Ryan and husband Tom. Ashley is an avid runner and beer drinker, but what makes her really excited is accounting. She is a CPA with public accounting experience and 10 years in industry. She has spent her whole life outside of Philadelphia so she has lots of recommendations for families visiting CHOP, too!
ashley.matura@agsaa.org
Team
Advocate, Contractor
Shannon Wieloch
Shannons joins the AGS Advocacy Association as a contractor and patient advocate, assisting with family support projects. As a certified genetic counselor with >20 years of direct patient care experience, Shannon brings a wealth of knowledge and empathy to the AGSAA.
shannon.wieloch.contractor@agsaa.org