The Autoimmune Registry hosts a monthly webinar to bring together patient advocacy groups related to autoimmune diseases. To attend this webinar, please register below.
Details: Wednesday, October 23rd from 12-1 pm ET via Zoom.
Agenda:
12:00 - 12:05: Convene
12:05 - 12:10: Introductions
12:10-12:20: ARI’s New Website Announcement
12:20 - 12:40: Understanding Myasthenia Gravis
12:40 - 1: Q&A
sPEAKERS
Shawn Ramagos
Chairman of the Board
Own MG
Mr. Ramagos serves as Chairman of the Board for Own MG and handles the media and marketing inquiries. He has a 20 year career in entertainment and media, being inducted into the Marquis Who’s Who publication as an industry leader in his field. He has operated several nonprofits in the past and has a strong background in nonprofit operations. As a patient of MG himself, he is thrilled to be involved in this organization, especially since it assists patients to understand their disease enabling them to become better advocates for their own health.
Christina Ramirez
Treasurer
Own MG
Choosing nursing as her career, patient advocacy and providing education for patients and families has been imbedded in her nature and life’s work for many years. After being diagnosed with Myasthenia Gravis (MG) and no longer being able to work in the ICU, Christina feels she was extraordinarily blessed to find a renewed sense of purpose and fulfillment within the MG community as the persistent theme and need for advocacy and education became so apparent. As a wife and mother of two children, Christina understands trying to find the balance between chronic illness and the various roles in life and the human need to be heard and understood. She strives to improve the quality of life for those struggling with chronic illness, especially those with MG and other rare diseases.
Aaron Abend
Executive Director
Autoimmune Registry Inc.
Aaron is an entrepreneur with 35 years of experience in software development, the last 15 focused on healthcare and medical research. He was co-founder of Recombinant Data, a software company that implemented database technologies for academic medical centers. Recombinant was acquired by Deloitte Consulting in 2012.
In 2013, his mother was diagnosed with Sjögren’s syndrome. He learned that it was autoimmune and witnessed his mother’s experience of waiting for 10 years before she was correctly diagnosed. He decided to build a registry for autoimmune illness, modeled on the National Cancer Registry, to improve diagnosis by gathering statistics and research on this important class of disease.