Our Team is Growing!
Welcome and Cheer Our New Members Who Will shape the future of Aicardi-Goutieres Syndrome and the AGSAA
2022 has been a landmark year for the AGSAA. We’ve rapidly expanded our team, increased our efforts, and grown a collaborative network of clinicians, researchers, and industry groups. Still, nothing has a more profound impact on a small organization than committed volunteers. As we identify opportunities and needs (e.g. a biorepository, newborn screening, clinical network, local support teams, etc.) we rely on volunteers to lend a hand.
Claire Martinez has been quietly serving as unofficial outreach coordinator for a couple of months. If you’ve been newly diagnosed, you have probably heard from her. She has joined the AGSAA to provide direct support and information to families as they navigate this rare and sometimes upside down life with AGS. Claire will be leading and developing our international AGS Champions program to train and empower global volunteers to provide local support.
Ashley Matura has joined as AGSAA accountant, but she’s passionate about other things like beer and advocacy. She is a CPA with public accounting experience and 10 years in industry. Very recently, she has volunteered to head the development of our newborn screening (NBS) program, drawing on her advocacy experience with NBS for cytomegalovirus.
The AGSAA still has many unmet needs and roles that span multiple concerns: basic organizational development and governance, family support and assistance, research development, marketing and fundraising, etc. If you’re interested in volunteering or learning more about what you can do, contact us! info@agsaa.org